Family Stories
We would like to thank all the families who have taken the time to share their stories. If you would like to share your story, please email nbdpn@nbdpn.org.
Ashley
George and Noah
Zach
Daniel and Jacob
Jesse
Anna
Ashley
"Ashley was born in 2005 with a condition called gastroschisis, which caused her intestines to be outside of her body. The beginning of her life was filled with surgeries and tests, setbacks and worry. She caught an infection in her central line that nearly killed her, and she needed a special transfusion and lots of strong antibiotics to keep her alive. It seemed so unfair that such a tiny person would have to endure so much, but she was a fighter and soon was able to come home. I will never forget the way she looked at the sky with silent awe the first day she finally left the neonatal intensive care unit, or how scary it was at first to have her home without the constant beeping of machines to monitor her. She has always held a sense of wonder and curiosity about the world, and Ashley has a resiliency that other kids her age don’t possess.
Seven years and a few more surgeries later, Ashley is doing really well. She is smaller than other children, which is normal for gastroschisis survivors. She will always be at risk of intestinal kinks and blockages, which makes every stomach bug or tummy ache a worry. She is also hearing impaired from an additional birth defect called microtia. Although her life was initially filled with challenges, Ashley is blossoming into a remarkable young girl who has inspired countless other gastroschisis families with her story.
George and Noah
"On January 12, 2012 at 33 weeks our twins George and Noah were both born with Gastroschisis causing thier intestines to be outside thier stomachs. We held George for the first time on day 12 and Noah on day 16. They each received 2 blood transfusions during our journey in the NICU.. They had many infections in thier central lines causing so many setbacks and requiring lots of medications.Then we learned both boys had kidney stones.They got thier first taste of milk at 3 weeks old. We experienced many setbacks after feedings started. Everyday we asked ourselves when would we be able to take our babie's home. We finally got to bring our boys home on day 77. Noah will will need additional surgery to repair his umbilical hernia later on. As of now we are dealing with food allergies from starting solid foods, acid reflux and a rare parasite in thier digestive system. They are two very special boys and have two very different personalities. We were blessed with not just one but two miracles."
Zach
"I had two very active boys, two years and eight months old when I found out I was four months pregnant and that it was another boy. It took me a long time to be happy about the pregnancy. I was 32 weeks along when we found out that our baby would be born with Spina Bifida. We were told that it was a very serious condition, that he would not walk, would have many other problems and that he would have a “poor quality of life.” We left feeling unsure and afraid, yet we also felt hope and knew that somehow, everything would be okay.
Zachary was delivered at 37 weeks, as soon as his lungs were ready. Within 24 hours, he had surgery to close the hole on his back and two days later had surgery to have a shunt placed in his brain to drain the excess fluid into his abdominal cavity. He did very well and was only in the hospital five days. At ten months old, he had to have his shunt replaced. He recently had surgery to stretch the muscles and tendons in his hips and ankles, allowing his legs to straighten out all the way. Zachary can’t walk but thanks to amazing therapists, is very strong and mobile in his own way. He likes to show-off in his wheelchair and “run” as fast as he can in it. He has had and will have many challenges and disappointments but that is part of life for all of us. He has a strong spirit and by no means has a “poor quality of life.” He is our hero and our inspiration and we love him and his brothers so much."
Daniel & Jacob
"I have a vivid memory of hearing the doctor say to me “Your son will have a cleft lip and palate.” Time stopped temporarily, and I felt suspended on the exam table. Cleft lip and palate? Me? My baby? As we anxiously awaited the birth of this special son, I played over the scenarios in my mind. Would he eat like other babies, would he look too very different? The wait was agony. When the baby came he looked up at me with his steel blue eyes and cherubic cheeks. Then, he nuzzled me softly, and I knew we would be alright. I would buoy him up and help him thrive, and he would do the same for me. Three years later, it was like a bad movie stuck in replay, “Your son will be born with a cleft lip and palate.” Wait a minute, I thought, I have already done this. I already paid my medical bills; we completed the surgeries. We have to do this again? Six months later my third son was born like his older brother, with a cleft lip and palate. This baby would suffer more with a more complicated condition. But it didn’t matter, I knew how to do it now, and any difficulties we experienced were swallowed up in our family’s love. Both children are resilient and active. My boys are strong and healthy. We have endured much and are grateful and stronger for it."
Jesse
I wrote this poem as a way to honor and remember Jesse who passed away suddenly at the age of 5 1/2 from an ateriovenous brain malformation. If I live to be one hundred years old, this will be the single most significant event of my life.
In loving memory of Jesse
Written by: Jane C., mom
Thoughts of you are with me
I carry them in my heart
An image of a young boy
And times spent at the park
Your favorite song was of a dragon
You learned to love as Puff
Because it was an adventurous tale
With lots of fancy stuff
Superman and He-man were your
Hero’s of the day
I have the power
I often heard you say
You had some other heroes
That were very special lads
Among them was a baseball player
And your very own Dad
You had learned to ride your bicycle
An exciting thing to do
But I remember how my heart
Skipped when I first let go of you
You were always such a good little boy
A transformer was your favorite toy
You loved to throw and hit the ball
Then race around the bases most of all
But I guess my fondest memory
Is when you used to say
Guess what I did everyone
I got another smiley face today.
Anna
When I was about 5 months pregnant, we went in for our “targeted” ultrasound with an ultrasound technician. We were not aware, yet, of the sex of our little baby, and our hearts raced in anticipation and excitement as we patiently waited for the official word. Finally, the tech told us, “It’s a girl…” My due date was March 3, 2009. I smiled and looked at my husband for his reaction, which was also an elated smile. “…But it looks as though she may have some issues.” the
tech continued. At first glance, she thought it may be an Omphalocele. But she wasn’t sure. We were given the name of a local specialist who would be able to diagnose her defect correctly.
Two weeks later, we met with the specialist, Dr. Ball, at Ogden Regional Medical Center. He proceeded to tell us that the defect was not, in fact, an Omphalocele, rather a Gastroschisis. He put us in touch with a colleague of his that specialized in Gastroschisis. That doctor was Dr. Byrne. Dr. Byrne was very knowledgeable with the condition and explained that Gastroschisis is a birth defect in which an infant's intestines stick out of the body through a defect on one side of the umbilical cord. She made us feel as though this was a fairly common condition and procedures that our baby would need were fairly simple, it was the recovery time that took the longest. Eventually we were meeting with Dr. Byrne regularly at the University of Utah Hospital and toured Primary Children’s Medical Center NICU where our baby girl would be staying while she underwent her surgery and transition time. We also met with Dr. Scaife, who would be performing her surgery. He gave us a rough estimate of 6 weeks to 3 months before our baby would be well enough to be home with us.
Just as we were coming to terms with the upcoming events, I had a regular scheduled visit with Dr. Byrne sometime at the end of January 2009. She asked me if I was feeling the contractions I was having. I replied that I was, but they weren’t painful so I wasn’t too concerned about them. I was then admitted for the evening into the hospital, which turned into bed rest at the hospital for the remainder of my pregnancy. As the long days passed, I received around the clock care from nurses, interns, on-call doctors, specialists and technicians. Finally, after about 3 weeks, the day came when Dr. Byrne informed me that our baby girl needed to come out. She scheduled my Caesarean-section for February 3, 2009, exactly 30 days prior to my due date. We were so nervous and excited at the same time. We’d finally be able to meet our precious little girl, but we still felt helpless and unprepared for what would happen after her birth.
In the early afternoon of February 3, 2009 Dr. Byrne and a team of pediatric surgeons, nurses, and anesthesiologists pulled our little girl, Anna NaVee Bune, out of my body. The doctor showed her to us briefly before handing her to the appropriate staff. We were told all of her large intestine was outside of her body, as well as a fallopian tube. Anna was bandaged carefully before being wheeled through the hallways of the hospital and over to Primary Children’s Medical Center. Once there, her intestines were placed in a protective "silo". This “silo” was supposed to gently push her intestines back into her abdominal wall with the help of gravity.
After 3 days of having the silo on, Dr. Scaife informed us that Anna was progressing quickly and was ready for her final surgery. They’d put her under local anesthetic and gently push the remaining intestines back into her stomach and stitch up her abdomen. Sitting in the waiting room while Anna was undergoing her surgery will remain to be one of the most nerve-wracking moments of my life. Luckily, it was over fairly quickly. Now came the waiting part. We had to see if she could tolerate the pressure of the intestines in her body, then work on being able to digest breast milk or formula. It was about a week before they attempted giving her my pumped breast milk through a bottle. She took to it quickly but would soon fall asleep or lose interest. Eventually she was eating a decent amount, and the doctors and nurses were pleasantly surprised with her very rapid progress. After only 17 days in the NICU at Primary Children’s Medical Center, our little Anna was released and sent home with us. It was as if a great weight has been lifted off our hearts and shoulders. We no longer had to drive an hour to see her, no longer had to get updates from nurses, and we were no longer worried about when we’d finally all get to be together. Our little girl was home!!
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| Out of the Mouths of Babes... |
During a trip to the hospital when Nick was eighteen, his mother said, "You need to think hard about the type of woman you want to marry. You need one that will help take care of you, be pro-active when you're sick, who'll listen to the doctor and ask question and understands what's going with you medically, one who's not scared to drive to the hospital in Atlanta."
He turned to look at her. In a disgusted tone, he asked, "So I need to marry you?" ~ Nick May (son of Susan May)
"Is it bad when you have a personal anesthesiologist?" ~ Nick May (son of Susan May)
"Daddy, do you take medicine?" ~ Nick May when he was 6 years old when he realized for the first time that not everyone had to take medicine everyday like he did.
