March 3 - Dear Nicholas Sparks (Guest Blogger Cassandra Carter)

Hi Mr. Sparks,

My name is Cassandra (Casey) Carter. If you saw me on the street I would seem like any other normal adult who might be a little too loud. What you would not see from just looking at me is that I am my parent’s miracle child. You have read both of their stories in earlier posts. What you would not see are the two large scars I have, one right under my left rib cage and one that goes right down the middle of my stomach. What you would not see is how lucky I am to be able to call myself a fighter and survivor. What you would not see is that I am able to bring hope to other parents. The reason being, I am a 28 year old left sided CDH (Congenital Diaphragmatic Hernia) survivor. This is my story and journey from my view with CDH. Of course, I don’t remember my birth, but I do know me and I can be somewhat dramatic. So I know that I needed to make my entrance into this world a big one and believe me, it was very grand and dramatic but not in the way it should have been. Here is my story.

Growing up, we all ask to hear different stories and normally it is our favorite one. Well, I would do the same thing only this story was about me and my fight for survival when I was born. Every year on my birthday, I would always ask my mom to tell me my miracle story. She would tell me how special I was because I only had a 5 percent chance of survival. See, I was born with a hole in my diaphragm and some of my abdominal organs were in my chest cavity. I ended up having to have surgery when I was 3 hours old and ended up being in the hospital for only 11 days, another miracle, as most baby’s hospital stays last for weeks or months. During that time I had to fight to live, it would be my biggest battle I have ever had to do. Looking at the pictures they had of me, which are many, because I have always loved to have my picture even with all the tubes and wires and what not, I would ask about all the tubes and different things that were attached to me. One of these things that I always found funny was a little paper cup on my head. You may be wondering why. Well let me back up a bit I was born on Dec 30th right before New Year’s Eve, so my dad could get a tax write off. So I would always ask about the cup on my head and my dad would say don’t you know that was your party hat for the New Year. I thought that was so funny. I still think it is, I am laughing right now while thinking about it. I had it there because I kept trying to take out my IV. Then after what my mom calls the longest 11 days of our lives, they were able to finally bring me home. Though I did end up having to have more surgeries later on due to my original surgery at birth. I had one when I was 18 months old and one when I was 23 years old. Both surgeries were due to bowel obstructions caused by scar tissue. Now if you ask me the one from when I was 23 years old was soooo more painful. I also have asthma, dyslexia, and ADD which we don’t know if that is from the CDH or not. It seems that many other kids with CDH also have these issues as well.

Now growing up hearing my story was AWESOME because I knew it made me one lucky kid/ adult to be alive. So I never had an issues showing off my scars to people whether they wanted to see them or not. I do remember one time when someone else had an issue with it. I was at a water park around middle school age and this girl about my same age asked me why in the world I would wear a bikini with such ugly and big scars on my belly. So I looked at her like she was crazy because I did not know who she was or what she was talking about. Because to me my scars are not ugly. My response, which may have been overly dramatic, because that’s me, I told her without them I would be dead, so I am quite partial to them and love them. They make me who I am. I told her my story then. I then watched her jaw drop. She was very impressed that I embraced them rather than hid them from the world. I still do.

Now we fast forward to 5 years ago. After my last surgery, my mom started researching about CDH affects adults online. That is where she found CHERUBS. Almost two years after that I was able to go to DC and meet many people in my CHERUBS Family. It was amazing to be able to talk to and hear other CDH stories and meet other survivors, although I was one of the oldest there. Since then I have been able to attend several other functions with CHERUBS and have become one of the Co-Reps for Texas. One thing you will learn fast is each family’s story is different but they all know what you’re going through or have gone through.

So I am asking you Mr. Sparks, please help us to show the world how strong and how hard these babies fight. I know how hard they fight and how strong each and every single CHD baby is. I lived it. We would be forever thankful if you could help us spread awareness. 

Sincerely,
Cassandra "Casey" Carter
CDH Survivor

March 2 - Dear Nicholas Sparks (Guest Blogger Connie Springs)

Dear Mr. Sparks,

On December 30, 1986 I first learned of CDH.  I had waited in":Grandmotherly" anticipation for the birth of my granddaughter and that day started out to be a happy, jolly, laughing family gathering that consisted of my daughter,in,law, Lisa Carter, my son, Phil Carter, Lisa's mother, Midge Taylor, Lisa's son, Joe and me, Connie Springs..  All of the wonderful celebration came crashing down when Cassandra was born and diagnosed with CDH.

After her birth, the nurses recognized that she was in distress and they allowed Lisa to hold her for a few minutes before rushing Cassandra to the hospital Nursery .  They took time to weigh her before starting X-rays.  They called her Pediatrician  and he arrived immediately, diagnosed her problem and ordered an ambulance to take her to Children's Hospital in Dallas, Texas.

I overheard a conversation between Phil and the doctor and Hernia was mentioned.  I had heard of babies being born with a Hernia but it was not considered a serious condition. I was not concerned until a nurse asked me,"Who is with the mother?"  I replied that her mother and son were with her.  Then, the nurse,made a statement that convinced me that Cassandra's condition was very serious when she said, ":Someone should be with the father also!"

The minister at the hospital arranged for a taxi to take me to Children's.  Before I left, the two brokenhearted Grandmothers met in a bathroom and consoled each other with words of comfort but our hopes and dreams dissolved into anxiety, fears and tears.

Shortly after I arrived at Children's Hospital we saw Cassandra as they took her into Surgery.  One can never be prepared to see an infant granddaughter, just four hours old, on her way to surgery or to see her afterwards, knowing the odds are stacked against her.  Sweet little babies, tubes, tubes, tubes.

We give God the praise that we can say, "Cassandra is a survivor!"  We also grieve with the parents of Cherubs that "fly away" ,  We believe that God has prepared a special place for these precious babies.

Many prayers were said on Cassandra's behalf and friends were very supportive.
This poem was written to my Sunday School Class after I returned to my home.

"Oft times we take for granted
friendships we hold so dear
But when the occasion arises
we find we need friends near
Though miles may separate us
we're close in thoughts and prayer
And it comforts one to know
that friends are really there
My gratitude to each of you
is exceeded only by my love
Another gift we're given
from our God above
I can't express the joy
for the blessings that God gives
for many prayers were answered
And our dear Casey lives.

Sincerely,
Connie Springs

February 18 - Dear Nicholas Sparks (Guest Blogger Phil Carter)

Dear Mr. Sparks,

My name is Phil Carter. This my recollection of having a miracle baby, Casey Carter, born with a Congenital Diaphragmatic Hernia (CDH) 28 years ago.  I was a 38 year old newlywed of about 18 months or so when I found out that I was to be a father.  My wife, Lisa, had an 11 year old son, Joe, from a previous marriage so I was in no hurry to have additional children as we were just getting into being a blended family.  So I never really thought I’d have a natural child of my own. (Miracle 1)

Lisa had some issues during the pregnancy that required 5 sonograms, all of which were described to us as normal, that let us know that we were having a baby girl.   Our doctor recommended a C-Section, so being frugal, I asked if we could have it early so as to get into the current year for tax purposes.  He agreed if “we” would have an amniocentesis, to which I agreed. This turned out to be fortunate as the C-Section was not as stressful on the baby at birth as natural child birth. (Miracle 2) The C-Section went as normal as they are and we delivered a 6 pound baby girl in Carrollton, TX.  There was some activity in the delivery room and the nurses took our baby away pretty fast.  Things happened very fast after that.  The doctor told me our baby was very sick and was being transferred to Children's Hospital and he had contacted our pediatrician who for some reason was in the building next to the hospital. (Miracle 3)

Our pediatrician rode in the ambulance to Children’s Hospital in Dallas.  I had a friend drive me to Children’s and upon my arrival I met my daughter’s surgeon who diagnosed her with CDH.  To my amazement he told me that he and his 2 partners were some of the only doctors in the DFW area that performed the type of surgery that our daughter needed.  He just happened to be on call.  (Miracle 4)

The surgery went as good as it could.  After the surgery the doctor to me that she only had a 5% chance of survival as there was no ECMO machine in the Dallas Fort Worth area.  He told me that most infants who are treated for congenital diaphragmatic hernia will require ECMO (Extracorporeal Membrane Oxygenation) in order to survive.  He said that if she needed the ECMO there was not much hope as it would take too long to get the nearest one (San Antonio) to the hospital.  She survived the night, odds went up to 10%. (Miracle 5)

Over the next week I ran back and forth from Dallas Children’s to Carrollton Hebron hospital relaying information to my wife and marveling over our trooper of a baby in the NICU.  Every day the odds of survival went up.  One of our neighbors happened to be in electronics and had a Betamax Video, which was new in 1986.  He came in and made videos of our baby and took them and a portable TV to the hospital so my wife who was 15 miles away could see her new daughter.  (Miracle 6)

After 11 days, which seemed like months, our daughter was released from Children’s and we brought her home and now 28 years later after getting her BA and moving into her own house we still have a MIRACLE BABY.......Ok, so she is an adult but to me she will always be my “baby”.

Sincerely,
Phil Carter

February 17 - Dear Nicholas Sparks (Guest Blogger Lisa Carter)

Dear Mr. Sparks,

I want to share my story of being a mother to a baby girl born with a Congenital Diaphragmatic Hernia (CDH). Every mother's story is as different as our children. This is mine....

My husband and I had been married about 18 months when we found out we were going to be having a baby. I had an 11 year old son from a previous marriage and we had decided that we did not want to have any other children. My husband had no biological children but enjoyed fatherhood with my son.  We were very happy with the size of our family.

I began to wonder if I may be pregnant. Well, I went to the doctor and it was confirmed. I was pregnant. We were not all that happy but I did not have a very positive experience with my first pregnancy. I was a teen mom with my son. I decided that God had blessed us and I was going to enjoy this pregnancy to its fullest. It took my husband until he saw the first sonogram for him to get on board.  It took my son some time to get happy. He didn't mind at all being an only child for 11 years!

I had some problems with a large ovarian cyst during the last few months of my pregnancy and had 5 sonograms during these months. We also found out we were having a little baby girl! We now we were all excited. All seemed to be going well.

The doctor decided it would be best for me to have a repeat C-Section so we scheduled it 2 weeks earlier than my due date. He did require an amniocentesis to make sure her lungs were mature. They were and C-section scheduled. My mom and mother-in-law were also here from NC to be with us when she came into this world. Off to the hospital we went that morning.

Everyone was so excited. I was prepped, epidural in place and off to the delivery room we went. Cassandra "Casey" Carter was born. The doctor held her up so we could see her. By now happy tears were flowing. Her cry seemed different. She had a very squeaky cry. The nurses had swaddled her and brought her over for us to see her. My husband held her for just a minute when they said they needed to take her to the nursery because she was having some respiratory distress. They told us it was probably because she was cold. I didn't think much about it because being a nurse I knew this could be true and they needed to get her warmed up.

After they sent me to recovery my husband went to the nursery to check on Casey. The next thing I remember the phone was ringing at the nurse's station and something told me it was not good. The head nurse came in and told me my new baby girl was very sick and being transferred to Children's Hospital. My daughter was diagnosed with CDH. I completely lost it and then in came my mom, who did not know yet. She wanted to know what was wrong. Then came my husband who yelled at my mom to get out. He was explaining to me what was going on and then came the pediatrician who explained more.

He was telling us that our beautiful newborn baby girl was very, very sick. She only had a 5% chance of survival. He was going to ride in the ambulance with her because they did not want to wait for Children's transport team. I would not be able to see her again before she was transferred as she was too unstable. So off she went and I did not know if I would ever get to see her alive again. One of the best days of my life turned into the worst, a nightmare. My husband followed in his car. My mom stayed with me and a neighbor came and got our son. My mother in law somehow got to Children's to be with my husband. So within 3 hours of birth my daughter was in surgery at another hospital.

She came through her surgery but was still very sick little baby. We had to worry about all kinds of complications but she was still alive. That was what we had to focus on. We took it one day at a time. Since I had a c-section my doctor refused to discharge me so I could go and see her. My husband spent his days at Children's, tried to keep things going at home with our son and both of our mothers and his nights with me. Finally after 6 days, I convinced my doctor to discharge me. He did so with explicit instructions I was to go home. I am sure he knew that was not going to happen, so off to Children's we went. Walking through those doors as a mom is completely different than walking through them as a nurse. As a NICU nurse, you are not only responsible for the medical needs of the babies but also be a support system for the parents.  Now I was a parent standing there next to the warmer needing their support. It gives you a whole new perspective when you become the NICU parent. There lay my beautiful baby girl who was becoming more stable even though she was still on the ventilator.  Her eyes were open and we just looked and stared at each other. All I could do was hold her little hand and keep telling her how much I loved her and that she needed to keep fighting. My husband, both our mothers and nurses said it was time for me to go home. She was stable and everything was looking good.  The nurses would us call if needed.

The next morning when we got there, Casey was off the ventilator and just on oxygen. I got to hold her, rock her and just enjoy my precious baby girl. The next day she was transferred to the regular floor. My mother in law stayed with her at night once she was on the floor. Casey and her "Memom" have a very special bond to this day. They made me go home at night. Casey came home at 11 days old. She is now 28 years old. She has truly been our miracle baby. We were never really told what to expect or complications that may occur. Back in 1986, if CDH babies lived everything doctors felt everything would be fine. Nothing to worry about or so we were told. There is still very little known about the life long effects of CDH on adults. She has had 2 surgeries for bowel obstructions at 18 months and 23 years old.  She has asthma, stomach "issues", dyslexia, and ADD.

It was not until 5 years ago when I started researching effects of CDH on adult survivors, did I find CHERUBS. I was so thankful to find them. Since finding them we have found that even though each baby and family has a different journey they have very similar issues. It has explained so much that she has gone through over the years. I am also thankful that families do not have to take this journey alone any more. Through CHERUBS families have a support system and other parents that totally understand.

Sincerely,
Lisa Carter