I want to tell you about the “best case scenario” of CDH. This is the phrase that both the pediatric surgeon and the neonatologist used when it was time to release my Micaela from the NICU. My daughter is a 17 year-old CDH survivor. She is spunky, musically gifted, an intellectual high achiever, kind-hearted and giving, the kind of kid that everyone loves. You know, the one who has every teacher in the school wrapped around her finger. Her personality usually fills the room the second she steps in. That personality is HUGE, yet she is a tiny little thing at 5’1” in height. And, she just makes me smile.
Most CDH babies are diagnosed in utero. Micaela is in the 15% who are not. I was a first-time mom, and was expecting a perfectly healthy pregnancy and birth. That was terribly naïve. I went into labor at 33 weeks, and arrived at the hospital too late to successfully stop my contractions. My OB doc prepared me by explaining that she would most likely be just fine, but would be transported to our closest NICU an hour away to receive the best care possible for a preemie. She was born only 4 hours after arrival at the hospital. She only took a couple of breaths before stopping altogether. She didn’t even cry. It was like a scene out of a movie, the kind of movie that may or may not have a happy ending.
Although the hole in Micaela’s diaphragm was small enough to be closed without the use of a GoreTex patch, it was indeed large enough to allow the migration of both her stomach and intestines into her chest. The surgery to place the organs back into her abdomen and repair her diaphragm went beautifully. The left lung was comparatively large and healthy. It was explained to me that this was due to a late migration of the abdominal organs, allowing the lung to develop fairly well. She did, however, need a small piece of it removed so as not to allow this dead lung tissue to appear like a cancerous lesion on x rays later in life. The appendix was also removed, which I believe is performed routinely to prevent later disease.
Nearly every day in the NICU proved to be a progressive trend towards going home. She was gradually weaned off of the ventilator, she never needed ECMO, she graduated from the NG tube before release, she came home completely tube-free, with only 2 oral meds for reflux. The first 5 years of her life were a bit of a struggle with asthmatic problems, bronchial spasms, severe gastrointestinal problems, and mild reflux. The problems became less and less frequent over the years, and she has never required any further hospitilizations or surgeries. This IS best case scenario for Congenital Diaphragmatic Hernia. This is as good as this birth defect can possibly be. She knows it, and she is grateful. She does not waste the gifts that she has been given. In fact, she is on a mission to share her gift with the world. And she will tell the world about her fellow cherubs. She lives her life mindful of all of the non-survivors, and all of the babies who are FIGHTING.
Micaela is a student in the vocal department at the Mississippi School of the Arts in Brookhaven, MS. She dreams of a Broadway career in musical theatre, and she will do what it takes to get there. She is a high school senior this year, is ranked 3rd in her class, and is currently applying to college musical theatre programs.
Mr. Sparks, thank you for your kindness. Micaela and I humbly ask that you join us in the fight to tell the world about CDH, and the need for more research. Just one mention of Cherubs and CDH would do a ton of good. And thank you for bringing YOUR gift to the world.
Hello, my name Kimberly Hager and I would like to tell you little about
our journey with my son Jayden. When I first found out I was pregnant
with him I was strict with everything I done!! I watches what I ate,
what I was around and took my vitamins just the way my midwife told me
to. Around 18 weeks I had an ultrasound and everything was alright and I
wouldn't have to go back for an ultrasound. I was fine up until 20
weeks and I had a strange feeling to change my doctors because I felt
like something was wrong! And that was the first motherly extinct that I
started to have. I had another ultrasound because the second doctor
couldn't see the the kidneys very well. After 2 days of having the
ultrasound I had a call at work from my doctor Mary. She suggested I be
seen by the University of Kentucky OBGYN because my son had a
Diaphragmatic Hernia. At that time I never new what that was or what
that meant for my baby's future! I was scheduled 2 weeks later and had
another of a many ultrasounds. This one was performed by one of the
OBGYN and she was very blunt and didn't beat around the bush to my
husband, mom, mother-in-law and I that day! She explained that Jayden
would be very sick when he would be born because of how his lungs were
forming and that he had a 50/50 chance at birth. Still, at this time I
was not understanding why this was happening or how!! She proceeded to
tell us that there really is no known cause for this happening and
suggest we speak to a geneticist to see her opinion! The geneticist
really didn't do much but take our family history down and ask if we
wanted to "abort" the pregnancy! NO why should we he's still got a
chance he still moves and is doing fine in the womb! Days, weeks and
months past and he keep growing and growing! And I knew the days were
ending when I went to my 3 to last appointment and I was having
contractions. I was placed in the hospital and had him at 36 1/2 weeks!
That was an exciting but also a scary day! He was delivered via
C-Section and weighing in at 8lbs .7ozs! There were no cries or
whimpers from him and no holding him in my arms for the first time. No
known skin to skin contact with him. He had a breathing tube places in
the OR immediately after he was born. He was on a convictional vent for
a few hours blood gases where not good so he had nitric gas and
isolator that put many breathes in at a time! Later that evening the
Peds Surgery Joe Iocono and Sean Skinner came to talk to us and
explained he needed ECMO! He was placed the next day on it and was on
it for 17 days! His surgery occurred while on ECMO 2 days of being on
it! He went from 8 lbs to 45lbs total of fluids! He was giving less
than a 10% chance at this time!! He recovered from that and gotten a
hematoma on his back from all the blood thinners giving because of the
ECMO. It was about 6 inches across by 7 inches pretty good size! It
busted that morning they were going to go in and fix it. Doctors had
told us that morning it's less than a 5% chance to survive! We prayed
and that day our little Jayden came off of ECMO! But had a very long
road ahead to fight hard and get where he is today! He stayed with the
nitric gas and isolator for 2 weeks and he pulled his breathing tube
out! And was placed on a conventional vent. The doctors decided we
could do all his meds and treatments at home all we had to do is
maintain a good air way because he wasn't coming off the vent! So we
choice for him to have a trach and vent placed so we could go home. He
never took a bottle so he had a duo tube instead of a gi tube or a NG
tube. So we had to learn to take care of all this equipment plus take
care of his baby needs to. It was very hard to understand why he
couldn't come off the vent. So 3 weeks prior to him being discharged
they did MRI. That confirmed he had more intestines up in his chest plus
his white matter of his brain was damaged therefore the doctors claimed
he would walk ever or have the same abilities as other kids his age!
We were sent home to do First Steps which is a program to help kids to
do therapy. Jayden begin in October around 9 months coughing and having
problems we go back to Dr Skinner and he explains after looking at an
X-ray more intestines is up in his chest! We were scheduled to come back
the next day and have it repaired! We had a 50/50 chance of having a
reherniation or having a Bilateral Diaphragmatic Hernia which is not
common to see babies survive with! We wait like it seems forever and
the doctors and nurses come out with him in his bed coming back from the
OR and our Dr Iocono came to me and my husband and explained he had.
Bilateral Diaphragmatic Hernia!! As for those doctors Jayden was the
first baby to survive with a BiLateral meaning he had a Left and Right
diaphragmatic hernia. Trach and feeding tubes came off that day through
the day and about 7 months later no vent at all. And in July of 2013 he
had his trach removed and started walking 2 weeks later! To this day
Jayden walks, talks, has no sensory problems more and eats whole food.
We had a journey worth him but he is a fighter but a loving fighter!!!
But he is the toughest kid I know because most adults couldn't take what
he took. I wanted to share our journey because there needs to be more
awareness of this horrible monster. Please help us spread awareness!!
Thanks so much!!!
My name is Melanie Parsons and this is the story of our baby son Jak.
Everything seemed OK when I had my first scan, where they confirmed my due date as 1st August 2001. Apart from bad morning sickness, all seemed to be going well, but at 21 weeks I went for my second scan which detected a problem in the baby's chest. I had to go back 6 days later to have another scan with a specialist, who confirmed that our baby boy had a condition called Congenital Diaphragmatic Hernia. We had never heard of this, and didn't have a clue what it was. The doctor explained it to us and then said that I would be referred to St. Mary's Hospital in Manchester, the only hospital in the north west of England that can deal with CDH. My appointment was made for the next day, so off we went for yet another scan.
The doctor there explained everything that could be wrong with our little boy and advised me to have an amniocentesis to see if he had any chromosome defects. I had this done and went home to wait the two weeks that it takes for the results to be known, two weeks that seem like a lifetime when your unborn child's future is at stake. It was after 13 days when I received a message saying the test was ok, the baby had a normal chromosome count. So, happy again for a while, having overcome the first obstacle.
We decided to call our son Jak Thomas Roy, and some of my friends made fun of the way I spelt Jak. Thomas was a friend's little boy who is now an angel baby, and Roy is my late brother. A special name for a special little boy.
I had to keep going to St Mary's for regular scans and check-ups and we even met one of the surgeons who would operate on Jak after he was born. It made things easier when we were shown around the Neo-Natal Surgical Unit (NNSU) where Jak was going to be cared for after he was born.
The doctors decided to induce me a week early so that the medical team would be ready for Jak. So on the 24th July I went into hospital and the next morning went up to the delivery suite where my waters were broken. Then I was given a drip to start contractions. Each contraction caused Jak's heart rate to drop, so he had to have a test to see if he was getting distressed, but he wasn't. My friend Wendy, and Paul, Jak's daddy, arrived while I was having this done and came in to me after it was finished.
Jak Thomas was born at 12.38pm on 25th July 2001 weighing 6lb 2oz. I held him for a couple of seconds before he was taken to have medical attention. We heard him give out a little cry, which was a brilliant sound to hear, as at the time, we didn't realise that it could be many months before we would hear him again. He was taken to the NNSU and we were told we would be able to see him in about 30 minutes. Two hours later we were still waiting. The midwife came in and explained that Jak's right lung had collapsed and he had to have a chest drain put in, but we could now go and see our little boy.
The first thing we did when we saw him was to take some photographs of him. He was connected to lots of monitors. An oscillating ventilator was supplying him with nitric oxide, and he had the drain in his side. The nurse explained all that was going on with Jak and what each thing on him was for.
I think it was at this point that it really sunk in as to how serious his condition was. Even though the doctors had kept us fully informed from the moment he was diagnosed, I suppose like most parents, we assumed he would be one of those CDH babies who have their op within a few days and go home after two or three weeks. In any case, although his insides were all messed up, to us he looked like the most beautiful baby in the world.
The next night, one of Jak's nurses, Louise came to me on the maternity ward to explain that Jak's condition had worsened, and suggested that we consider having him baptised in case he didn't make it through the night. So it was panic stations as I contacted Paul, who came back to the hospital bringing Jak's two grandmothers. We chose to have Jak blessed, and at 12.30am the chaplain performed a short service. But Jak, being a little fighter, slightly improved.
The next day Jak was very poorly again, and one of his doctors said that the best option for Jak would be to transfer him to a hospital in Newcastle for ECMO. Jak had to come off the oscillator and onto a conventional ventilator before he could be transferred, but he only lasted an hour before his SATS all dropped, and he had to go back on the oscillator. So, no move to Newcastle.
On the Sunday after Jak was born (4 days old) the doctors told us yet again that he may not make it through the night. Again we all prepared ourselves to say goodbye to Jak, but once again he improved slightly.
Jak eventually came off the nitric and back on conventional ventilator. There was another little boy with CDH who was 4 days younger than Jak, but little Louis is now an angel baby and left us at 10 days old. We will never forget him.
We were told that because Jak was so poorly, they did not think having surgery to repair the hernia would help, as out of 250 babies as poorly as Jak, only one had ever got better, so the odds were stacked heavily against him.
However at 5 weeks old the doctors decided that surgery was worth a try after all, so they could say in their hearts they had tried everything possible for Jak. He had his operation on 30th August. It was carried out by Mr Adrian Bianchi, the surgeon who separated Siamese twins Gracie and Rosie Attard, from the Mediterranean island of Gozo, in November 2000, an operation that received worldwide media coverage at the time, due to it being one of the most emotive cases in medical history. It was reassuring to know that Jak was under the care of such a world-renowned surgeon. We were told Jak should be ok through the op, but moving him to theatre would be the difficult part, as they would probably need to keep stopping on the way to let him stabilise. When they wheeled Jak off the ward to go for his op, it was one of the worst moments of my life.
The operation lasted 3 hours, and immediately afterwards, Mr Bianchi, still in theatre gowns, came to us and explained that the hernia in his diaphragm was very large and they'd had to graft some muscle from under his left arm to mend it. He joked that Jak and he were fine during the op, but they'd given his anaesthetist a few scares between them. As he said this, the anaesthetist, standing beside him, pretended to wipe the sweat from his brow. We knew from their reactions that the operation had been a success.
After the operation Jak was put on a course of steroids to help boost his lungs. He improved with all this and the next step was to take him off his paralysing drug, which at first he didn't tolerate, but they left him a while and tried again. The second time he came off and it was brilliant to see him moving about.
We had good days as well as bad ones. He was still on morphine and got down to 0.3 but had a bad reaction when it was turned lower. So they left him on it for a while longer. In the meantime Jak decided one night at 2.45am when all was quiet on the ward, to pull his ventilator tube out which knocked his progress back a bit. A new vent was put in and Jak seemed to be improving. They made a more diluted morphine so they could wean him off it more slowly, and this time Jak finally got off his morphine.
After his op he was not gaining weight so he had to go on special baby milk called infratini, which he did not like as it gave him bad colic. So they changed it to something else, as he needed high calorie food so he could put weight on. He now weighed 8lb 6oz which was good for Jak as he at one point went down to 6lb 4oz, just 2oz heavier than birth weight.
Jak gave me a big smile when he was 13 weeks old when I told him off for keeping on grabbing at his ventilator. As I kept moving his hands away, Jak must have thought it was a game as he started to smile. Another milestone for Jak. Jak was still on his ventilator and still making very slow progress when he decided he'd had enough of his vent and pulled it out again, so it was panic stations yet again.
Jak was put onto normal baby milk which seemed to agree with him better than the high calorie milk. He still suffered with colic, just not as bad, and still had to have Infacol colic drops.
Still on steroids, Jak had a very good Christmas. The week before Christmas the
Family Circle (a support group for families with babies in special care, run by parents who have been through the same) visited with Santa. Jak knew something different was going on and fought to stay awake, then fell asleep as soon as he had his picture taken with Santa. On Christmas day, his daddy and grandparents and I went to the hospital to see Jak. We had lots of presents for him. Again he was aware that something was going on and was overwhelmed with all his new toys and teddies.
Jak was now five months old, learning new things all the time. Even though he could not make a sound he would sing along to his nursery rhyme tapes with one of his favourite nurses Ian, who also taught Jak to blow raspberries. Another nurse Caroline was teaching him naughty things such as pulling hair.
Jak loved music and noise and would dance to his musical toys which sometimes set off the alarm on his SATS monitor. Another of Jak's mischievous tricks was, if he was not getting all the attention that he thought he should, to pull down the headband that held his ventilator in place. Jak did this lots of times and would laugh when he did it. One time he watched his nurse Tony walk away from his cot, waited until Tony had his back to him and pulled the headband over his eyes. When Tony was putting it back to the correct position Jak was giggling and kicking his legs about; he saw this as a funny game.
Jak had been on the steroids for a long time and could not stay on them any longer, as long term use could cause problems elsewhere. So he had to come off them after doing so well on them. He had improved so much his vent came down to a rate of 3.5 per minute. The doctors were very pleased with how much Jak had improved and things were looking positive. They explained that the next step was to have a tracheotomy, then be moved to another hospital, as he was getting too big for the ward at St. Mary's. We didn't want him to leave the brilliant nurses and doctors but it was what was best for Jak.
Unfortunately, before the move or the tracheotomy could happen, Jak began to deteriorate, which came as a shock after all the progress he had been making. He was started on a course of inhaled steroids, but did not cope well with these. The doctors got us in for an update on Jak and explained that they did not think he would get well enough to come off his vent, that his lungs could not support his body as they were too small and under-developed. We asked lots of questions such as could a lung transplant be done, but Jak was too poorly for this.
On the 23rd of January I stayed overnight at the hospital with Jak, and the next morning one of the nurses woke me at 6am to tell me he was very poorly. His daddy came in to the hospital and we spent some time alone with Jak. As he lay in his cot, he looked up at us and his eyes seemed to be telling us that he'd had enough, that he couldn't fight anymore.
We got his grandparents in and at 10-30 am in his daddy's arms and mine, Jak fell asleep for the last time. He did not suffer or gasp for breath, he just went to sleep and his hard long fight was over.
The nurses and doctors at the hospital have been brilliant throughout and remain to be there for us. Six nurses came to Jak's funeral. It was a special day for a special little boy. We played Eternity by Robbie Williams, as this had become known as Jak's song, because it was number one in the music charts when he was born.
One thing that I have noticed about having a poorly baby is who my real friends are. Some had never even bothered to go and see him and if I had Â£1 for everyone who said they'd get Jak a present when he came out of hospital, I'd be a very rich person. He has been treated differently from babies that are lucky enough to be born in perfect health.
The day before Jak's first birthday, we had a memorial service in the hospital chapel, as a lot of the nurses wanted to say goodbye to Jak but could not come to his funeral. Jak will always be our special little boy who will remain in our hearts forever and everyone that met him will remember his big brown eyes and long eyelashes, plus his gigantic smile that could melt the heart and seemed to light up the room. We'll always love our little spud Jak Thomas.
We have since had another little boy, born on the 27th July, 2 years and 2 days after Jak was born, who we have called Ben Jak Thomas. We chose to give him Jak's names as his middle names in memory of his big brother. The pregnancy and birth were problem-free, but that did not stop the worry and concern. We were given the option of going back to the same hospital where Jak was born but we chose to go to our local hospital.
Even though we were told that everything was fine with this baby, we could not help but worry in case they had missed something and fate would repeat itself. At the back of my mind I thought that something would go wrong. It was only after the doctor had checked Ben over that I was happy that he was fine. Ben is now a happy, healthy 2 year old and has no problems at all, which we are very grateful for.
We have told Ben all about Jak even though he is too young to understand properly. When we ask him who Jak is he replies "Jak is Ben's big bruvver". When he is old enough to understand properly we will explain all about Jak and why he is an angel baby. Also we have memory boxes for both Jak and Ben which contain everything from birth congratulation cards and name bands from the hospital, to Jak's sympathy cards and Ben's birthday cards, which Ben will be given when he's old enough to look after them and understand what they are.
I hope Jak's story has not been too long and that you have enjoyed reading it as much as I have writing it, even though it has been hard to sit and remember everything without getting upset. That is why it has taken three and half years since Jak died to finally finish it.
Written by Jak's mom, Melanie Parsons (Great Britain)
My Name is Jodene Forsythe and I am a mother of 2 boys who both had
diaphragmatic hernia. When my first child, Dylan, was born it was not
detected on the ultrasound. When he was a newborn to 4 months he could
not burp, pass gas, or have a bowel movement rarely on his own. I told
his doctor and health nurses on every visit and they told me it was
normal (even though I was breastfeeding) and to use suppositories to
help him. At 4 months of age (the day I fed him his first pablum) he
screamed in pain lifting his legs. I thought he had gas pains from the
pablum. 12 hours later he was to the point of exhaustion we took him to a
near by hospital. At this time he was throwing up everywhere. The
doctor there told us he had a throat infection and flu and gave us a
prescription and sent us home. We went to my parents who lived near by
to drop Dylan off so we could pick up his prescription my Dad told us he
wasn't breathing normal and we should take him to the children's
hospital. When we got there they took x-rays and were shocked (as were
we) when they saw his bowels up to his collar-bone, his left lung
collapsed and his heart shifted into his right cavity. They did
emergency surgery and told us if his bowels twist he will not make it.
We were very fortunate and thankful that the surgery was a success. Two
months later at home, Dylan started screaming in pain and lifting his
legs up. I phoned my husband to see what I should do and he told me to
take him to the hospital. At the hospital they took x-rays and his
diaphragm had herniated again and they had to do emergency surgery. The
surgeon said she had never heard of someone having it happen a second
time. She also told us that if we were to have more children the chance
of it happening to that child is 2%. Well when my second son, Ryan, was
born 19 months later he had RSV and we took him to emergency because he
looked so sick. They did x-rays to see if he had ammonia but what showed
up instead has a diaphragmatic eventration. I asked to see the same
surgeon to see what she thought. She was very surprised. She said
because Dylan had had an actual hernia she was afraid Ryan's diaphragm
would herniate, so she wanted to do surgery to make his diaphragm taunt.
It worked but unfortunately when Ryan was 7 months old I couldn't wake
him one morning- he was moaning and dry heaving but almost unconscious.
We took him to the hospital and they found through a cat-scan that he
was bleeding in the brain AVM not an aneurysm. He is fine but has
epilepsy. Last December 1997, Ryan had the croup and started throwing
up. They did x-rays and his diaphragm had broke and had to have
emergency surgery. Needless to say 5 surgeries in 4 years has taken its
toll but my husband and I have gotten closer and the children are my
angels from God.
I found out I was pregnant in March of 2006. My husband and I had just
started trying and were thrilled that it happened so soon. It was
defiantly not an easy pregnancy as there were minor complications such
as bleeding in the beginning and than gestational diabetes later on. I
had bad heartburn, was sick a lot, and gained more weight than I should
have. But throughout the pregnancy, although I was having some problems I
was continuously assured that my baby was doing great and was healthy. I
was scheduled to be induced on November 21, right before Thanksgiving,
because of the diabetes. However, Gabriel had a different idea. The
Saturday before my scheduled induction, my water broke at 5:40 in the
morning. I called my doctor and he told me to go in immediately so they
could monitor my blood sugar. We drove to the hospital and got ready to
meet our baby. The labor was relatively easy and fast. I didn't start
active labor until around 3 in the afternoon and at 5:55pm Gabriel Eric
Nava was born. That was when everything started spiraling down.
Immediately Gabe was having problems breathing so they took him away
before I got to see him. After over an hour of waiting a doctor finally
came back and gave us the news. Gabriel had CDH and had to be
transferred immediately. They brought him in for me to see in an
incubator where I was able to touch his hand before they took him away
to Women & Infants hospital. When we arrived there later that night
they had Gabe semi-stabilized and started to explain what was wrong and
what needed to be done. They hoped to be able to stabilize him there for
a few days and than do surgery. The next two days were awful. They
tried desperately to keep him stabilized by trying different ventilators
and settings but his O2 SATS kept drifting down. He needed to be
transferred again to a hospital that had ECMO. They took him by
helicopter up to Mass General Hospital and the doctors there put him on
ECMO. From then on it was a roller coaster ride of emotions. Some days
he would look like he was doing great and improving, but there always
seemed to be another complication that needed to be overcome. Gabriel
showed he was a fighter and surprised the doctors a few times by
overcoming an obstacle they didn't think he would. He was on ECMO for 36
days, which was one of the longest stays on ECMO. After multiple failed
attempts to take him off he finally came off the day after Christmas
and things looked good for a while. We were able to hold him for the
first time on New Years Day and he seemed to be getting better. The
problem that he could not overcome was his kidneys. He had become very
swollen in the beginning and they couldn't seem to get the fluid off of
him after his repair surgery. They ended up having to put him on a
dialysis machine (CVVH). While he was on ECMO it pulled the fluid out of
the tubes already attached to him and it worked beautifully. However it
also shut down his kidneys. When they took him off ECMO they also took
him off the CVVH in hopes that his kidneys would start working again.
After a while when it was clear that they still needed help they tried
to put him back on the CVVH. They tried three times to hook him up to
the dialysis but his body couldn't handle the new demand of the machine.
The night of January 11th he took a serious turn for the worse. He was
severely swollen and now they couldn't keep his O2 SATS much above 70
even on full support on a Jet Ventilator. There was nothing more they
could do. We knew Gabe was telling us that he couldn't fight anymore. We
had to let go. Early in the morning on January 12th we held our boy for
the 2nd and last time as he passed away peacefully in our arms.
Although he was only here for a short time, he touched so many lives as
all of these Cherub babies do. He was loved by so many and will always
be in our hearts.
In late June 1998 our OB doctor observed that Beth's stomach was too
large for the gestational age of the baby. This condition known as
polyhydramnios is the result of extra amniotic fluid. At this point our
OB felt that an in depth ultrasound was needed by a perinatalogist. On
July 1, 1998, 28 weeks gestational age, Michael was diagnosed with
Congenital Diaphragmatic Hernia (CDH) from the perinatalogist at Va.
Beach General Hospital. We came home devastated not knowing what to do
or where to go. Mark got on the Internet and began doing research and
found the CHERUBS support group. He sent out a message requesting
information from anybody. We received 30 plus responses within the next 2
Those responses along with discussions with our OB, Perinatalogist and
the Neonatalogist at Children's Hospital of the Kings Daughters (CHKD)
convinced us we should not deliver Michael at any of the local
hospitals. All of the sources said we needed to deliver in an ECMO
(extra corporeal membrane oxygenation) facility. The closest facility
for us was UVA Medical Center in Charlottesville, VA. We contacted some
friends in the area to stay with and of course had to get permission
from the (HMO) insurance company to be referred to UVA. Prior to
leaving, we established an e-mail prayer network with over 100 families
and friends. Through our family's entire ordeal we knew that thousands
of prayers were being lifted up to the Lord on a daily basis. This
network reached across the world to three continents.
We left Va. Beach on August 3, 1998.Beth had her first doctor
appointment at UVA the following morning. This began a 6-week wait for
the C-Section delivery of Michael. Each Monday we would go to the
hospital for an amnio, in order to check for surfactant in his lungs.
Each time the index number was not high enough to induce labor. The last
week before delivery, Beth received steroid shots but the index number
still did not increase. Delivery was scheduled for Tuesday, September 8,
Michael Christian was born at 12:01pm, 9lbs. 6oz. and 21 inches long. At
birth both lungs collapsed, his left was the best and the right one was
smaller than normal. Michael was put on ECMO when he was 15 hours old,
because of pulmonary hypertension, a condition in which blood does not
flow well through the lungs. He stayed on ECMO for 21 days, during this
time the surgeon fixed the hernia on the right side of his diaphragm
with a gortex patch the size of a fifty-cent piece. Also, the ECMO
canullas wouldn't go in the correct place in his neck vein. Many
attempts to correct the blood flow to the ECMO machine failed. The
surgeon performed thoracic surgery twice in a 10-hour period before the
ECMO pump would work properly. As a result of these ECMO problems and
the need to infuse saline into his blood stream, Michael became swollen
to an indescribable size, his ears and eyes all but vanished. Because of
the thoracic surgery and the need for blood thinning drugs to prevent
blood clots in the ECMO machine, Michael started to bleed into the sack
around his heart. This again caused more problems with blood flow to
ECMO. Michael's swelling was so bad that weeks later his nurse told us
that she didn't think he would survive. The bleeding from the chest
surgery went on for several days, with some days bleeding more than 1
pint per day. But once the ECMO machine and the related blood thinner
was removed, the bleeding stopped within an hour. We calculated that
Michael used 5 gallons of blood product while on ECMO, through the
circuit changes and blood transfusions.
We thought we were out of the woods once Michael was off ECMO, but
within 24 hours, he had to be placed on Nitric Oxide gas because of
pulmonary hypertension. He was on this gas for 27 days. Again we were
told weeks later by his doctor that he had not seen a child survive that
showed signs of pulmonary hypertension after ECMO. Finally, when he was
7 ½ weeks old he was extubated from the ventilator and we got to hold
him for the first time. We had the best smiles that day from everyone,
think Michael's were the biggest. The next 3 weeks would be spent
weaning him from the narcotics and attempting to teach him to drink from
a bottle. Both were very hard. We all left the hospital on November 20,
1998, 75 days after Michael was born. He was released though still on
75 ML of oxygen and with an NG feeding tube for supplemental calories.
We drove straight home to VA Beach. Within 3 weeks of Michael's
homecoming he was taken off of oxygen and his feeding tube. We kept him
at home for the most part until the end of April, because we didn't
want him to catch a cold, virus or RSV from anyone.
We made monthly trips to CHKD to receive synogis shots to prevent RSV.
Michael did have one more surgery in March 1999 to rewire his sternum
together. Because of 2 thoracic surgeries his breastbone did not fuse
back together properly. Just two days after this surgery, 2 of the 3
wires placed around the bone broke again. The surgeon said we would just
wait until he is older. Michael was behind with his motor skills, but
with the help of physical therapy and the early intervention program he
caught up by the age of 9 months. Michael is such a blessing; we refer
to him as "Michael the Miracle Baby."
Michael's parents, Mark & Beth Fogelgren (Virginia)
I became pregnant with my third child after losing a baby, Jesse, a year
and a half before to anencephaly. On June 23rd, my water broke, and we
went to the hospital in Waterloo to deliver what we thought was a
healthy child with no problems. We were going to have a repeat
C-section (I had a C-section with my first). I was prepped, and we were
giggling and having a good time. I was giving Tony a hard time because I
wanted a girl, and we didn’t know at the time what we were having.
The baby came and Ryan Matthew Mudderman was born into the world at 4:00
in the afternoon. He was blue minutes after delivery, and I was told he
was having trouble breathing. I didn’t know all the details because I
was still on the operating table. Later I was in my room, and the
priest was in the NICU baptizing my baby. They called specialists to
take Ryan to Iowa City by helicopter because he was diagnosed with CDH.
I hadn’t seen my baby yet, and the nurses were telling me that I
wouldn’t be able to see him until I got to Iowa City. I told them that
he was not leaving this hospital until I saw him. Well, you’ve never
seen nurses move so fast-- two hours after a C-section I was on my feet
in the NICU.
My little boy was so full of tubes and wires, it was like a nightmare. I
saw Ryan’s doctor Nicole, who flew directly to receive her little
patient. She told me that Ryan might not make it through the helicopter
ride, and I lost it. I was transported an hour after that by ambulance
to Iowa City, and there I asked to see my little boy and wanted to know
how he was. They said he was holding his own. My little angel was
never coherent after that; they had him on so much medication, and he
was so sick they could not stabilize him enough to have the surgery that
he needed. They said they could not do anymore for him, and he was put
in my arms, his tubes removed. Before he went to heaven, he was
visited by all his family, and his big brother Jayson held him and
counted his little toes and kissed him goodbye. Jayson gave Ryan three
toys to play with in heaven-- Thomas the tank engine to remember his
brother Jayson, a John Deere tractor to remember his daddy because daddy
makes them at work, a helicopter to remember his first flight, and I
gave him a stuffed rabbit that was made by me before we knew that he was
a boy so it had ribbon flowers on it.
Ryan's parents, Denise Dunfee & Tony Mudderman (Iowa)
Benjamin was our first pregnancy. We had been trying for 3 years to have
a child. We did not use fertility drugs however. I had the perfect
pregnancy. I was never sick and felt full of energy the whole time. I
gained a total of 16 lbs. even though I looked like I had gained 40.
During the entire pregnancy I had only had one ultrasound. There was
just no indication that there was a problem. When I went into labor I
was five days late. When the nurse was checking me in and attaching me
to the monitors, she had a hard time picking up Benjamin's heartbeat
even though when she could find it, it was strong. This would later turn
out to be because his heart had been pushed to the opposite side of his
chest. My labor was 12 hours long. Benjamin let out a small cry. He was
laid on my chest for a fraction of a second. In that second, his brown
eyes and mine connected and I memorized his face. That would be the last
time I saw that face without tubes for the next 3 mos. He was rushed to
the nursery to be worked on. A nurse manager came and told us that
there was a hole in the diaphragm that would have to be corrected with
surgery. At this time, I still did not realize he might die. He was put
on a ventilator and transported to a wonderful hospital in Sacramento.
My husband James went with him that night. By this time we knew it was
serious and I had to have James with him just in case we lost him. I was
isolated from the other mothers and within half an hour was receiving
calls from surgeons asking for permission to do all kinds of things. I
was still so drugged from the birth that I had to grab a pen and paper
to write down what they were saying so I could read it later. What did
stick in my mind though was that they kept saying "It was never
detected? Didn't you have an ultrasound?" My blood boiled and my head
was saying "If anything happens to my son, I will sue Kaiser and every
doctor and radiologist who touched my file." Later I learned it was that
cut and dry. Benjamin held his own on the ventilator until early the
next morning. My parents came and checked me out of the hospital (I was
pacing the halls waiting for them) and drove me to Sacramento the next
morning. I realized that I had not taken any pain medication since the
labor and was beginning to feel it. We met James and his brothers who
had gone up to be with him. James and I went to the NICU together. I
will never in my life forget the smell of the disinfectant soap that was
used to scrub everybody up. We put on gowns and went to find our son.
He had begun to deteriorate so he had been put on ECMO aprox 4 hours
earlier. He looked lifeless and I was afraid to touch him. His machines
took up half a room and he had two nurses devoted to his care alone. We
met with the doctors who were very blunt about the fact that he was not
responding well at all. They did keep mentioning how he would move even
when he was given a paralyzing drug. That had to be a sign of strength,
didn't it? We stayed only a short time. James was sick to his stomach
and I was weak. We went back and forth several times that day. We had
tons of family all around us and no one knew what to say. My sister in
law was able to let us stay in an apartment she had been using. That
night after everyone left, we finally talked about what could really
happen. James reassured me that we would have a family and that Benjamin
would always be a part of it even if it had only been for a short time.
He reassured me that our marriage could handle it and that we would
survive. We sat on the living room floor and prayed out loud. Then we
cried. That became our routine for the next few days. Benjamin didn't
improve by day 7 and I was running out of hope. I finally asked a nurse
how long the doctors would let Ben stay on ECMO before turning off the
machine. She felt that things would be decided around 10 days. Luckily
on about day 9 Ben started making some improvement. By day 11 they were
ready to take him off. They had done a trial run. His heart stopped.
They did CPR. Ben had a new nurse that night and when I called to check
on him (I was very up because of his progress) she informed me that they
had just had to perform CPR and that he was on 100% oxygen. A total
setback. I was devastated. Luckily Benjamin bounced back within hours.
They cut back the rates and let him stabilize for about 24 hours. They
took him off successfully. They kept him stable until day 13 and took
him to surgery. We watched as they wheeled my infant into the operating
room. We talked with the surgeons and nurses. We were confident that he
would come through with flying colors. The entire family was there. I
was starting to feel pressured by this so I was extra nervous. Finally
the surgeon called us into a separate room and told us the status.
Benjamin had survived the surgery, but had had such a small diaphragm
the surgeon didn't know if he would survive or not. His left lung was
only a bud and there had been very little room in the belly for the rest
of his organs. He said we wouldn't be out of the woods for six more
weeks at least. The next six weeks brought about staff infections and a
second surgery for pyloric stenosis. Finally on oxygen and a g-tube with
a feeding pump we took Benjamin home. He thrived at home. We still went
through our share of infections and panicked moments in the middle of
the night. We have been to two different emergency rooms three different
times. The last time, interns were called in to observe because
Benjamin was so rare. Our last major infection was with the g-tube
itself. I finally scheduled a doctor's appointment and when the doctor
came in I said, "I'm removing the g-tube, what do I do after that?" He
was so flabbergasted that he had to go check with another doctor. When
he returned, we removed it together. Since then Benjamin has become a
major bottle baby, growing to 22 lbs. We just celebrated his first
I could go on for days about Benjamin and his story. I feel like it is
my job now though to help others going through the same thing.
Hi my name is Michelle Motley. My son Brandon was born on 5/13/94. During my
pregnancy everything was "normal". I was seeing a midwife and my husband
and I expected a healthy baby boy. When Brandon was born everything
seemed normal until the nurse said that he was making gurgling noises
that weren't normal. They took him to the newborn ICU and did some chest
ex-rays. My Mother in Law was getting worried and I told her that there
was nothing to worry about (little did I know). About 2 hours after he
was born the doctor came in a confirmed that he had a diaphragmatic
hernia. His left lung was only 20% developed and the right was 80 %
developed. They also said that they weren't sure if he had eyes. Brandon
was then taken to Primary Childrens Hospital. And had repair surgery
when he was 12 hrs old. During all this time I didn't realize how bad
things were. Brandon came out of the surgery and he looked so helpless.
The hardest thing for me as a Mother was watching the nurses and the
doctors poke him. Brandon led a very eventful life. After he came home
from the hospital we tried to make things as normal as possible. When he
was 5 months old we packed the car up with oxygen tanks and went to
California to visit family. My dad had gotten a full size tank for his
house. When he was about 6 months old he got sick and went into the
hospital for the last time. While there he was trached and never got off
ventilator support. He was back and forth between the hospital and a
nursing home. Brandon continually worsened and I knew that there was
nothing that the doctors could do. My husband refused to let the doctors
take him off life support. Finally after the doctors explained to my
husband that his kidneys were failing and everything else was going my
husband agreed to let go. Because we were afraid of Brandon turning blue
when he was taken off we decided not to be there. A family friend was
there. Let me tell you that was the biggest mistake of my life. I saw my
son the day before and kissed him 80 times (to symbolize every birthday
that I felt that he should have had). I will regret not being there for
my son that day, but I know that he has forgiven me and his dad. We
buried him in California and we plan on moving there soon so that we can
be near him. Brandon was the best thing that ever happened to me. He
was a happy beautiful little boy. He did things that no one thought he
would ever do, like smile â€¦because of no eyes they said that he
wouldn't smile, of course he proved them wrong!!!!! We have 2 more
children who are perfectly healthy and I am grateful for them, but I
know that Brandon is always with me and I know that I will be with him
again someday. I'm sorry that this was so long, there are still so many
things that could be said about Brandon but there isn't enough time in
the world to write then. Thank you
This is my daughters story with CDH. I remember going for a routine
sonogram at 24 weeks. I remember laying there and feeling her go over
the same spot on my belly over and over. She then said I need to go get
my boss; I see something that isn't right. The other lady came in and
took a look herself. She then began to tell me what she saw and how it
wasn't right. They told me they would have to send me to see a
specialist in Dallas. A week later I went to see a doctor who
specializes in sick babies. She told me that my daughter Aubrey only had
about a 30-40% chance of making it. They told me that she had her
liver, spleen, stomach, small and large intestines all up in her chest
cavity. So every month I would go down to Dallas and they would tell me
each time things didn't look good but as long as she stayed in me she
was safe. At my last appointment they told me I would be induced in a
week. I had my daughter on February 25th.
She was intubated right away. They doctors where very impressed with
her because she only required a high-frequency oscillator. At four days
old they tired to change her to a regular ventilator and she did
wonderful. At six days old they did surgery to repair the whole, the
hole was so big the had to use a gor-tex patch to close the hole up. A
week later they took her off the ventilator and put her on oxygen. At
first she did good the they had to got up on the amount of pressure they
were giving her. A couple of days later she was down to almost room
air. So we worked of feeds and she did great! She then came off oxygen
too. A month later on March 25th
we got to take are baby home with no medical equipment. She is now
seven months old happy and healthy as could be! I'm writing and sharing
my store so that maybe one day we can find out with cdh happens to these
sweet babies, and better way to safe them!
I am driving back from the Toronto conference with my mom and my aunt. My family is French Canadian and I couldn't not take them with me to see the land that my grandfather was from.
Driving back home we drove through Acadia and by pure luck (or God's guidance) we stumbled upon a reenactment village. And in the village was a restored ancestral home of one of my great-great-great... great-grandfathers Theriault.
We got to visit inside the house, met a distant cousin who sang a song to us about our family in French, ate bread baked in the fireplace and got to raise some CDH Awareness.
The only thing missing was my grandfather and my son, bless their souls. But they were there with us. And these Save the Cherubs photos with wings are very dear to my heart.
Our son Tyler Anthony Finley was born May 9,1998 with a diaphragmatic
hernia. We were very upset to learn that our baby was sick. Troy and I
found out that Tyler had a hernia when I was 4 months pregnant through a
routine sonogram. My OB/GYN sent us to a hospital in St. Louis
Missouri to get monograms and an amniocentesis. We live in Centralia
Illinois approximately 77 miles from the hospital.
The ultrasound tech and doctors confirmed Tyler did have a diaphragmatic
hernia. They gave me several options. Carrying him to full term,
possibly terminating the pregnancy or sending me to Colorado for an in
utero surgery. The only option for us was carrying him to full term.
If we lost our baby we would deal with that when it happened, if it
happened. I went for sonograms once a month. Then it turned into once a
week. When I was 36 weeks pregnant an amniocentesis showed lung
maturity. The doctors, in St. Louis, where I would deliver, scheduled
me to be induced on May 12,1998. On May 9,1998 I went into labor
myself. Tyler was on his way. We were nervous and excited all in one.
Tyler was born at 10: 16 p.m. He weighed 6lbs and 4oz. The doctor who
delivered Tyler didn't want him to cry, but he did. We didn't even get
to hold Tyler when he was born. The staff took him to another room to
intubate him and prepared him for the transport to Cardinal Glennon
Children's Hospital in St. Louis. The nurses even wheeled my bed to the
NICU so I could be with him while they were getting him ready. The
transport team even brought him into my room before they left.
I went to CGCH after I was discharged from the hospital. When I walked
into the NICU and saw Tyler I sat in a chair and cried. Troy had
already been up to see him, but he couldn't explain how many tubes and
monitors were hooked to Tyler, and he knew what to expect, I didn't. He
tried to prepare me, but I didn't think Tyler would look like he did.
He looked so helpless. My baby did not even look sick, but he was.
Tyler underwent surgery to repair the hernia when he was 5 days old.
After that they had their ups and downs with him. He'd do really well
one day and bad the next. He had to have one blood transfusion and his
oxygen levels went up and down. They tried to turn the oxygen level
down but his blood gases would come back bad and they would have to turn
it back up. When Tyler was 2 weeks old we finally got to hold him. It
was so wonderful to hold our son.
A few days after that we got to try to feed him but he couldn't get the
concept of sucking, swallowing, and breathing at the same time. Finally
around July 98 he finally started to suck a bottle briefly. He did
well but not much stayed in his stomach, he had reflux very bad. He'd
drink 1 ounce and 7 would come up. Tyler had a Nissen Fundoplication
and a G-tube inserted on July 17,1998.
Then everything stood still. I became frustrated with everyone,
especially the doctors. I was upset about everything. I felt I wasn't
being a mother and that Tyler wouldn't even know whom his mother was. I
couldn't stay at the hospital with him because I had to work so every
night we would make the hour and a half trip to see Tyler. We'd only
get to stay a little while because we had to get home because we both
had to go to work the next morning. Finally I told the doctor's exactly
how I felt and 3 short weeks later Tyler came off the oxygen and on
August 1,1998 he got to come home. He came home on an apnea monitor and
of course he had his feeding tube
He was hospitalized in our hometown in September 1998 with pneumonia. A
week after he was discharged he was admitted again. I thought to
myself, here we go again. But it was a short stay and he got to come
home. Tyler started taking a bottle when he was nine months old and we
didn't have to use his feeding tube anymore but the docs would not take
it out until he was a year old. His feeding tube was removed two days
after his first birthday. Tyler is going to be twenty months old on the
ninth and he eats like crazy. He has a partial right lung and a fall
left lung. His weight is lower than most 20 month olds but we figure he
has conquered so many obstacles in his life so far who cares if he
weighs only 20 pounds and just recently started walking by himself. He
breaths heavier when he plays and things but that doesn't stop him from
having fun and acting like a healthy baby with two lungs. Tyler is our
miracle baby and we are so happy to have him in our lives.
Fourteen years ago, I was told I would never get pregnant-- you can
imagine our surprise when I discovered on July 16, 2001 that I was eight
weeks pregnant. My 20-week ultrasound was perfectly normal, as was
all the other testing done (I am 37 yrs old). My pregnancy was
uneventful until I went into preterm labor at 32 weeks. I was measuring
about three weeks ahead for my dates, and my blood tests for glucose
showed borderline gestational diabetes. So they did an ultrasound to
see how big the baby was. It was at that time that they discovered he
had a left-sided hernia. I was alone at the hospital when they gave me
the devastating news, and I had to break it to my husband.
The next couple of days were a blur as we talked to several different
doctors who felt that things would be fine as all other tests on the
baby were normal. We continued the pregnancy until 39 weeks when I had
to have a C-section due to breech presentation, and I went into labor.
Spencer was born Feb 21, 2002 at 10:30 a.m.-- we heard him cry as they
whisked him away to NICU. He was initially on a ventilator but was
quickly put on an oscillator with 100% oxygen. He was doing okay until
the next morning. He developed a hole in his right lung (his left lung
was under developed). Again with the help of a chest tube, he
stabilized, and then three hours later he had a massive pulmonary
hemorrhage, which eventually took his life. The doctors and nurses
tried everything, but we had to make that horrible decision to turn off
the machines. He died Feb 22, 2002 at 2:30 p.m.
Three months later I still struggle everyday-- why my son? We waited so
long for this little miracle, and now he is gone. I spend a lot of
time with the pictures we have of him, but what I would give to have him
in my arms again.
We didn't get much time to see Toronto at the CDH Workshop Conference, but that is just fine because we are here to work, but Josh and I did get to see a few things while walking back and forth to the conference.
And we did get to meet CDH Survivor, Edwina Chu, and see our friend, Kristin Aigner, who heads the CDH Clinic in Peoria.
We also managed to raise just a little bit of CDH Awareness.
Today was another incredible day at the International CDH Workshop. Josh and I got to present more research in the form of a poster presentation.
CHERUBS alongside research by Harvard, Columbia, Children's Hospital of Philadelphia, Great Ormond Children's Hospital in London and so many other incredible institutions. What a dream come true.
Our very first accepted medical research abstract from our very own Congenital Diaphragmatic Hernia research. This was an incredibly big deal for a little mom from North Carolina without a medical degree. This is a incredibly big deal for every mom and dad, grandparent and survivor at CHERUBS. It was a huge team effort.
But I must say that without Jason Miller, our office manager who tirelessly worked on this data for months... we never would've pulled this off. We are blessed to have him on our team.
What a blessing all around.
Dawn M. Torrence Williamson
Today I am in Toronto and gave my very first speech on CDH research at a medical conference. I was overwhelmed and terrified. But I did it. It has taken 20 years to get here and WE did it!
We spent years on our research abstract that we have a poster presentation for but just 2 weeks before the conference we were asked to present a speech on
Our families rallied together and we had a great response on such short notice.
Why is this research so important? Why was this speech so special? Because CDH families have never had a collective voice in research before. Because families are blindly raising their children not knowing what to expect because most of these children did not live until the 1980's. Because as a bunch of moms and dads, presenting research data at the same podium as surgeons, pulmonologists, neonatalogists and fetal doctors... this was the first step to being able to help our own children on a much larger scale.
A first step, but a tiny one. They still need research funding. They still need awareness. They still need more hope.
My job is no where near finished.
Dawn M. Torrence Williamson
Determined CDH Mom
Today is my son's angelversary. 16 years ago this evening, Congenital Diaphragmatic Hernia took his life after a very brave 6 and a half year battle.
Shane should be 22 years old right now with just one special day, not two. There shouldn't be a dash on a headstone between January 28, 1993 and September 11, 1999. That dash is supposed to hold an entire life story of growing up, going to college, getting married, having children, growing old. Instead that dash stops at just 6 years old. He will never get his driver's license, his first kiss, fall in love, watch his child be born or hold the hand of his elderly wife. I will never watch my son walk across a stage to get his diploma. I will never give him parenting advice. I will never visit his home. I will never be a grandmother. CDH took all of that away. CDH is that dash on his headstone. His whole life ruled and taken by a cruel birth defect that he did not deserve to be burdened with.
This morning, I stopped by the cemetery in Virginia as I head out on a long drive to a medical conference for Congenital Diaphragmatic Hernia. This September 11th not as hard as 2001 when terrorists hit our country. This September 11, 2015 is still hard as I relive the same day in 1999 as I do every single year.
I wrote this in 2002:
September 11th- Jeremy woke me up at about 4pm. His parents were
visiting and Shane was "acting funny" so I got out of bed. When I went
into the living room, Shane was sitting in the floor, surrounded by
toys, Sesame Street blaring on the television, holding his best friend,
"baby" (a stuffed Precious Moments pillow) and his Mimi (Grandma) was
doing chest p.t. on him. He was coughing and the ends of his fingers
were a little blue. I started to give him an albuterol treatment and
sent Jeremy to the store to get a bulb syringe to see if we could clear
his throat for him because he kept pointing to his mouth. I finished the
treatment and started doing chest pt with Shane sitting in my lap. He
was getting a little bluer so I called 911 and told them to send an
ambulance just in case. One minute he was sitting there, seemingly ok
except for the cough, and then he just passed out. I laid him down and
tried starting beating his chest and shaking him to wake him up. Jeremy
walked in just as he passed out. He was turning blue and I couldn't see
his chest moving. I tried to get a pulse but I couldn't. I called 911
again, screaming "Where is the ambulance, he's coded. I called 5 minutes
ago and we only live 2 blocks from the hospital!!!!!", all the while
trying to do CPR. I handed the phone to Jeremy's mom so I could do
mouth-to-mouth and when I went to blow in I could hear gurgling. I could
barely get air in.
Jeremy's mom was on the phone and running around the house getting me
the oxygen tank, ambu bag and anything else I screamed for (God bless
that woman for being there and being calm and being such a huge help).
While I was doing CPR, his chest tube blew. I was flashing back to the
day he was born throughout it all- I could hear words coming out of my
mouth, I was doing CPR mechanically without thinking about it, and yet
an entirely different conversation and experience was going on in my
head. It was like I was watching and not participating and all I could
think was "Please God, no, please God, no….".
The ambulance finally got there. It was probably only 10 minutes from
the first 911 call but it seemed like forever. I TOLD them I was riding
along, they didn't want me in the ambulance. They had an ET-tube in
Shane and were trying to get an IV line in. We got to the hospital and
the staff wouldn't allow me in the crash room. I stood outside the door
screaming that I was his mother and that they didn't know his history
and I was no typical mom and they had better kill me before they were
keeping me out of that room. One of the doctors finally relented when I
started rolling off Shane's medical history and medical terms that he
probably couldn't believe were coming out of this strange woman's mouth
who obviously didn't look like a medical professional, having not even
had time to brush my hair and wearing a stained sweat suit (stained from
Shane). When I finally got in there I talked a nurse into finding
Jeremy (who had followed us to the hospital) and bringing him in and
talked the doctor into calling Shane's surgeon (thank God for Dr. Taylor
explaining to him who we were and what we knew, the doctor's attitude
toward us did a 180 after that phone conversation). Jeremy and I just
stood there, holding each other, and watching the monitors. They
couldn't shock Shane because he still had systolic pressure. It took an
hour to get a good line in him (and surgery to get it). There were a
dozen people in there working on him and every 10 minutes or so the
doctor came over to us and told us that they weren't getting any
response, even after pumping him with Epinephrine. I only left the room
for a few minutes to call my family.
In what seemed like only seconds, 2 hours had passed and then I had this
calm come over me. I always told other parents that they would "know
when it was time to let go". Now we knew it was time. After 2 hours and
pnuemothoracies (air in his chest cavity from all the bagging), his
diaphragm probably totally gone, and his brain irreversibly damaged,
Shane was gone. Shane was gone before we even left the house. The doctor
came over to us again and we told him we knew it was over. I asked them
to keep working on him long enough so that we could say a prayer and
Jeremy and I could hold him when they stopped. All the doctors and
nurses held hands with Jeremy, his parents, and me and even the doctor
said a prayer. We held him when they stopped bagging him. I was so numb
and I didn't want to let him go and at the same time I just wanted to
run away. We left so they could clean him up and they brought a rocking
chair down from the maternity ward. I called Judi and told her what
happened and in a few hours she was on her way to NC to be with us and
she was calling some of the members. My family got there and we took
turns holding him, even my little nieces and nephews wanted to hold him.
They were confused but not scared and I'm glad they got to say
good-bye. We had to take Shane to the deserted x-ray waiting room to
hold him because they needed to empty the crash room. We held him for
hours and took pictures and cried and cried. We told him it was ok to go
to heaven about 10 times before it felt like he left. He didn't want to
leave us and it broke my heart to tell him to go. I just couldn't
comprehend that I would never get to hold him again. I never wanted to
hand him back to the hospital.
Judi and more of our family arrived at our house that night and the next
day Tara Hall, one of our members and a dear friend, drove down from
Ohio to be with us. I e-mailed the Listserv that night and the next
morning we called more family and friends and had to tell Shane's home
health nurse, Delores, who had been with him for 5 years and next to
Jeremy and I, the closest person to him. Thankfully her husband answered
the phone, because I just couldn't bear to tell her. Everyone at the
house was trying to help us make arrangements and make more phone calls.
I kept myself busy by making the funeral programs- I couldn't sit and
think about what happened because I knew if I started crying I couldn't
make sure everything was done the way we wanted. It was the last thing
we would be able to do for Shane, I wanted to remember it and not be in
the tearful fog I'd fall into if I let myself cry. Now I know that
postponing grief was a horrible decision, but it was the only decision I
could make at the time that would allow me to survive those first few
days and weeks.
We decided to bury Shane in Virginia, at my parents' house in an small
orchard. We had moved to NC to bring him home from the hospital, now we
wanted him in Virginia where he should have come home. The funeral
director did a great job and found a white casket with cherubs on it and
even took handprints and footprints for us. Shane was laid to rest in a
Sesame Street outfit, his sneakers, wearing his favorite baseball cap
and his glasses and holding his baby and surrounded by his favorite
toys. We had a viewing the night before the funeral and we asked
everyone not to whisper, but to talk loud enough for Shane to hear them
from heaven. The funeral service was beautiful and the programs were
Sesame Street themed and the church was literally overflowing with
CHERUBS' members, Shane's nurses, family, and friends. People we hadn't
seen in 10 or more years came to say goodbye to a little boy they never
even got to meet during his short 6 and a half years on Earth. One of
Shane's Godmothers, Rachel, who was his primary nurse during those first
10 months, wore a bright fuchsia and yellow dress to the funeral- she
knew Shane would have loved that dress. I wish I had thought of telling
everyone to dress in bright colors. During the service Judi read a
letter and a beautiful poem written by Jennifer Wasik, another member
and dear friend. My sister and her husband read letters to Shane that
Jeremy and I had written, Shane's uncle, James, sang "The Dance" (a song
we had sung to Shane since the day he was born) and Shane's uncle,
David, read a very touching eulogy. At the graveside we released 6 Elmo
balloons for every year he spent here and 100 blue, red, and yellow
balloons for every year he should have spent here. It was raining that
day but it stopped just as the funeral started and the clouds actually
parted over the cemetery. We had a Sesame Street cake at the wake (the
wake was after the burial). It was not a typical funeral, but he was not
a typical kid. We wanted to celebrate his life.
After everyone had left after the wake I was outside in my parent's yard
and pollen from a tree I had never noticed before and never remembered
having pollen starting falling and blowing around like snow. The pollen
was just the shape and size of little feathers from the wings of
cherubs. It blew around me like a scene from a Christmas movie and I was
very peaceful at that moment. Maybe it wasn't pollen. Maybe it was
Shane letting us know he had reached heaven and was now with the other
His headstone has pictures of Elmo, Big Bird, a truck (he loved his
dad's truck), and one of the logos I had drawn for CHERUBS web site- a
cherub wearing suspenders and glasses (one I had created to look like
Shane). How do you fit an entire, even though short, life on a stone? We
wrote a few words about Shane on it, his name, the dates, and also
carved on the stone is "Psalms 18:10"- He flew upon the wings of
cherubs, yeah he did fly like the wind.
We had a memorial service in NC the following week and more members of
CHERUBS came, including Susie and Jim from SC and our dear, dear friend,
Rhonda, who was with us in the very beginning when our sons were
hospital roommates so many years ago. One of our members, Beth, had even
come to visit Shane when he was in the hospital. I don't believe there
could ever be a better group of people like we have in CHERUBS.
We miss him so much. I can't believe this isn't just a bad dream. I hear
him and see him all the time through memories. Sometimes I expect to
see him walk through the door, dragging toys into the living room and
smiling at me. Shane was such a happy kid. He was always smiling and
laughing and even though he was stubborn he had the best temperament and
sense of humor. Looking back on that day in the car, I believe he knew
it was his time to go and he wanted to make sure he remembered what we
looked like. I used to joke that he was psychic because we always
understood him, even before he had a means of communication. Now we
believe he was just a very spiritual kid with the soul of an old man.
His eyes were much too old to belong to a 6-year-old.
We take each day at a time and are thankful for all the time we had with
him. We know that even though we didn't have him as long as parents of
healthy kids have them, we had him longer than a lot of other parents
have their children, and even though his life was hard it was a good,
happy life and we wouldn't change a single second of it or have traded
for him any healthy child. I sleep with the "baby doll" he had when he
died (we buried him with one of the other 12 that he owned- they kept
multiplying over the years). Holding that doll makes me feel closer to
Shane. Shane will forever be our hero and in our hearts. The picture you
saw at the benning of this story is of me and Shane telling Jeremy
"Happy Father's Day" (there was a sign, but I had to crop it out). It
was one of the last ones we have of Shane and it is the last one of him
before he got sick. During his last week we had planned on taking him to
get professional pictures taken, but we kept procrastinating. We regret
that so much now.
Other than losing Shane and letting him go, writing an e-mail to tell
the on-line members what happened was one of the hardest things I have
ever done, next to writing this story. I know that Shane's story will
scare so many of you, but please know that Shane was atypical his entire
life. I don't know what to tell new families that call who ask "Was
your child a survivor?". Now we know both sides- life as parents of a
survivor and life as parents without their child. I hope that something
good will come out of this and it will make me a better President for
CHERUBS. Like I've said for years "You can't compare one CDH child to
another"- that holds very true in this instance. We'd already had 2
families quit because what happened scared them so much, but what
happened to Shane was a 1 in a million complication. I don't want
anything else horrible to come from Shane's death, his death was
horrible enough. I especially don't want families leaving the support of
CHERUBS. If any of you have questions or worries about your own child
because of reading Shane's story, please get in touch with me and I will
be glad to talk to you about it.
Even I as I post this here for you, I feel every emotion of that day flooding back to me.
Please, Mr. Sparks, please help me to stop this from happening to other families. Please help us to raise awareness and give back those dashes on headstones to very old men and women who live long lives despite CDH. No parent should ever have to bury their child.