I am writing to you to about one of our family's CDH stories in hopes that you and others may understand just a little what so many families go through, and why we hope you will support CHERUBS in their mission.
Today, February 19, 2015, my daughter Alicia and I will celebrate our cherub's 5th birthday. And like so many other families we will decorate, have cupcakes, balloons, sing the Happy Birthday song, and talk about all that has happened in the last five years. Unlike many families we also have to be mindful of the rain, as the ground at the cemetery gets very mucky when it rains, and oh, don't forget, we have to get all of this done before dark as there is no lighting in that area, and when it gets dark up there, it gets VERY dark...
We are the other side of the 50% of the CDH equation, part of the 50% that don't survive... :'(
Our story began in June of 2009. My youngest daughter had been in an on-again / off-again relationship with a boyfriend that was moving toward the off-again phase. She found out she was pregnant around the 4th of July. It was pretty easy to figure out, as she was VERY sick from very early in the pregnancy. A positive pregnancy test pretty much confirmed what we already suspected. An unplanned pregnancy can do 1 of 2 things to a shaky relationship, bring them together or push them apart. Mom and dad could not work things out and he went a different direction in his life.
The next few months were VERY hard. Alicia already had an enlarged aorta in her heart that required extra monitoring, and she was SO sick with morning sickness that she was loosing weight and could hardly function. By 3 months along she not able to continue working. Things turned from difficult to scary at 7 weeks when she started having severe abdominal pain and we feared a miscarriage. Luckily things were ok, but we got another scare at 11 weeks when a nuchal translucency ultrasound found suspicious findings that suggested there could be a problem with the baby, and the pressure to abort was poured on hot and heavy. All Alicia ever wanted to do was be a mom and with her heart issues this might be her only chance. She was not going to give up on her child!
They wanted her to do an amnio but she refused. She did agree to a CVS test which showed no abnormalities on the most common areas. It also showed she was carrying a boy... Alicia is half Irish from her late father, almost half Scottish from me, so her Celtic roots run deep. She wanted to give him a good strong Celtic name so she picked the name Jayden. He would need all his strength for what would come later.
His next ultrasound on October 14th at 17 weeks would put us into a tailspin. I don't know if Alicia or I remember all the events of that day exactly, but like so many other's stories the tech took a long time... going over the same areas multiple times. We were asked to sit in the waiting area, then were taken back and were told they suspected he had CDH. They hoped the defect would be small, but any hope of that was shattered by the next ultrasound in November when they found the defect was severe. We were scared to death for what it might mean for Jayden...
They said his chance of survival was 50% if he did not need a type of heart-lung bypass machine called extra-corporeal membrane oxygenation (ECMO). Sadly because it was severe, ECMO was almost a certainty. Since OHSU did not have ECMO available (it finally became available at OHSU last year) she would have to deliver at a Legacy Emanuel.
The good news was that his heart was ok although squished a bit, and the liver was not in the chest, just his stomach and some intestines. Heart problems or liver involvement would have reduced his survival chances further. He also had cysts in his kidneys which they did not seem to think would be a big concern. Under normal conditions they may not have been, but circumstances were far from normal...
The next few months were a total rollercoaster. Alicia threw a blood clot in her lung the day after Christmas which almost cost her and Jayden's their lives, and as a result had to have injections of blood thinners twice a day for the rest of the way through the pregnancy. Have you ever tried to give your very pregnant adult child a Lovonox shot in the abdomen while trying to avoid monster size stretch marks and try not make it hurt? A mom want to make her child feel better, not cause pain. :-(
Premature labor was a constant battle, gestational diabetes, migraines, worrying about her heart condition, pain in her back and chest from her spine and skeletal problems, and the never ending morning sickness that was relentless all the way through. I am so proud at how hard she fought to get him as close to 40 weeks as she could, to give Jayden every chance for a good start to life.
At 36 weeks on February 18, 2010, Alicia woke to what seemed like just a little leak. Us women don't like to talk about it but when you are pregnant a baby sitting on a bladder is not your bladder's best friend. She thought that's all it was. It wasn't until our last childbirth class that evening when our very astute teacher recognized the signs of early labor and made us promised to go get it checked out. And we did. Her water was leaking and likely had been all day. We had made it far enough into the pregnancy to have ECMO available if needed. It was not optimal but it would have to do.
All through the night and into the next day she labored, and that afternoon Jayden was born. He wasn't supposed to make any noise as they planned to intubate him right away to prevent him from swallowing air, but he gave us 3 squeaks just because he was going to do things his way. I was supposed to follow him into resuscitation, but for some reason I felt I needed to stay with Alicia. I'm not sure if was divine protection or just a mother's instinct to protect her child, but it kept me from seeing what we late found out was Jayden coding, and them having a hard time getting him back. I have a medical background and have even done CPR on a baby myself before, but could I have stood there and seen my own grandchild coding? I don't know...
He did poorly that first night, and a few hours later what we feared came to pass as ECMO became his only hope for survival.
Alicia had run into another complication from the epidural with a headache that literally lasted for a week. She missed so much of that first week, unable to stand for more than a few minutes at a time. I tried to juggle caring for Alicia, being at the NICU and work (we were too short staffed for me to use much leave). Exhaustion was a constant companion but it was so worth it as we saw Jayden improve. First his lung inflated and he kept his numbers rock solid for days, enough that he was able to come off ECMO that Friday at a week old! Now to get him to surgery...
He looked SO good that weekend! They started talking surgery by Monday but by that Sunday evening the pulmonary hypertension monster that takes so many of our warriors had reared it's ugly head. Alicia and I watched and waited as he fought so hard. He was on and off the oscillating ventilator. It's a type of ventilation that can help these babies, but they can't do surgery on it. Another week went by and the hope to getting surgery seemed smaller and smaller as he started to swell up. Pulmonary hypertension was pushing those strained kidneys to the breaking point. He swelled even more than he did on ECMO. For every 1 step forward he took 2 back, and by day 19 the decision had to be made to go to kidney dialysis or let him go. His awesome surgeon Dr. Bliss still had faith and so did we. On dialysis he went as the clocked ticked down...
One of the hardest things about being a parent is seeing your child hurting. Sometimes I wish I could go back to when my kids were little and all they needed was a kiss and a hug to make things better. One of those times hit me when I was walking up to the NICU and a Charlie Chaplin song popped into my head..."Smile, though your heart is aching, Smile, even though it's breaking..."
Family and friends came. We hugged. We cried. We prayed. Two days into dialysis, day 21, the nurses asked if she wanted to hold him. We knew it was risky but she hoped he would feel her there and rally. And if it was to be too much, at least her would pass in her loving arms. She decided to get him baptized, just in case. I swore I was going to be strong and brave. Yea. I was bawling all the way through...
He did GREAT through the hold! The next day had had some wet on his diaper. Most parents pray for dry diapers. We prayed they weren't dry. How weird is that, to pray for wet diapers? I know a bunch of CDH parents that have done that...
There are connections a parent has with their child that defy explanation. No words have to be spoken, they just know. That morning Alicia woke up and could see something had changed and it was not good. She called me to come up and I could tell from her voice it was not good. He was fading and she knew it was time for him to join his grandfather in Heaven. We were so blessed to have some time to take pictures, get footprints and shower him with love.
On March 14, 2010, Jayden grew his wings.
He was 23 days old. :'(
The story may have ended here with Alicia left to mourn and the rest of us left to close this chapter and move on but for one thing, CHERUBS. We found CHERUBS just before Jayden was born and they were our rock, our cheerleaders, our support in ways no one else, even family, could be. When Jayden passed they mourned with us. They lifted us in the days after his passing. They understood what we had gone though. We knew we could not let Jayden's story end here. We joined CHERUBS in the battle against CDH and five years later we continue to fight, so hopefully someday soon the answers will be found to stop CDH, once and for all. We owe that to our cherubs survivors, to the memory of the lost, and to all the cherubs yet to come.
We have held parades, made videos, worked on fundraising contests, met with families, medical staff, staff for our local senators and talked to the media, yet we would gladly have exchanged it all just to be spending this 5th birthday chasing a hyper birthday boy around Chuck E. Cheese. We need to find the answers to stop this from happening. Please help us, help all of our warriors win this battle once and for all!
CHERUBS Oregon Co-Rep
CHERUBS Parental Advisory Board (CPAB) volunteer
Grandma to CDH angel Jayden Gilbert
02/19/2010 - 03/14/2010