Gastroschisis & Trisomy 18 - Hailey

When I went into labor with my first child, I was expecting to give birth to a healthy baby girl. Unfortunately, this was not the case. When our little girl, Hailey, arrived into the world, I heard her cry, but I remember waiting for her to be placed on my chest. When she wasn't and things seemed to be taking too long, I knew something was wrong. I remember looking into my husband's eyes as they welled up with tears and offered no answers, looking as worried and confused as me. Only after our new baby was whisked away to the NICU, without me ever seeing her, did anyone start to explain the situation. It was difficult to focus on the doctor's words, but they began to tell me that it appeared as though she had a condition called gastroschisis. Typically gastroschisis occurs when part of the intestines comes out through part of the umbilical cord. While most cases of gastroschisis occur early in pregnancy and can be discovered during ultrasounds and tests, nothing ever showed that Hailey had the condition. While gastroschisis isn't very common and can be dangerous, it is treatable. Unfortunately to be treated, our daughter had to be immediately flown to a level III NICU hours away so that she could have surgery performed to correct the problem. No one had ever suspected she had any medical issues before her birth and the entire experience of not seeing my firstborn baby after giving birth to her, having her airlifted to a hospital hours away, and then spending time in a NICU because of it was quite traumatic. My husband drove to be with her while I had to wait to be discharged the next day. I was reassured that while her condition and situation seemed quite scary, surgery could correct the problem, and it was likely she would be just fine. When I went to meet my husband and daughter at the NICU the next day, I learned that our daughter had already undergone surgery to place her intestines back inside of her abdomen, and it had went well. When I saw her, it was such an unusual and somewhat scary sight. She had a lot of wires and things attached to her. There was an interesting contraption made out of a rubber band and paperclip attached to her belly that seemed to be helping keep things in place. Unfortunately, this contraption and the healing that needed to occur in her intestines and belly kept us from being able to hold her. While seeing our baby girl like that was extremely difficult, the nurses reassured us that the surgery had went well, and while in most cases they might have been able to say she should recover just fine, in our case, they could not. Hailey began having episodes of apnea where she would stop breathing. They also began to notice other "smaller" issues that raised concern that something else might be wrong with her. And so as she healed from her experience with gastroschisis, the doctors began to run various tests on her. 

Our NICU experience with our daughter began because of a condition called gastroschisis that could be corrected, but soon our NICU experience changed drastically. Over the next several days, doctors monitored Hailey as she healed from surgery and ran many tests on her to try to find a diagnosis. Her gastroschisis, apnea episodes, and other signs like a skin tag and what they considered small set eyes, led doctors to believe she might have another condition that eventually caused them to run a FISH test (Fluorescence In Situ Hybridization). It took several more days to receive the results from that test, but when they came back with the results, nothing could have prepared us for what they were about to tell us. The doctors told us that the results showed that our daughter had Full Trisomy 18, a lethal genetic disorder that meant she had 3 copies of her 18th chromosome, instead of the normal 2, in every single cell of her body. This prevented her body from functioning and developing correctly. They told us that her form of Trisomy 18, Full Trisomy 18, was caused spontaneously at contraception, was untreatable, incurable, and fatal. The doctors couldn't tell us how long Hailey had to live. They explained it could be hours, days, weeks, maybe months at best. Because of her frequent apnea episodes, they felt it could happen any moment.In light of the learning our daughter had Trisomy 18, we were then faced with decisions no parents ever expect to make. We also learned a lot of information about Trisomy 18. Some from our medical staff, but mostly from our own research online. We learned that Trisomy 18 affects babies differently and there are different types of it. Most Trisomy 18 babies die in utero or are stillborn. Those who do survive birth are unlikely to make it to see their first birthday. Unlike most Trisomy 18 babies, Hailey's major organs were healthy and functioning (the only problems she had were in regards to her apnea and poor breathing). Many babies with Trisomy 18 have heart and / or kidney problems, they also often have cleft lips, but she had none of those. She really seemed like a healthy baby who only had gastroschisis, but a closer look proved otherwise. The other signs, like I already mentioned, were cosmetic, like her skin tag and small features. But because of the frailty of her life and many other factors, we made the difficult decision to stop medical intervention so that we could hold her and cherish our time together as a family. 

The hospital staff released us from the NICU and moved us to a private family room in the hospital where we stayed for a few more days while doctors and nurses monitored her. We held her constantly and were able to spend time bonding with her. She always wore a nasal cannula to help her breathe, and she worked her way from receiving IV nutrition and a feeding tube to taking breast milk from a bottle, which was an incredible milestone. Eventually Hailey was stable enough and receiving enough nutrition from a bottle to be able to leave the hospital and take her home with us. We were in the hospital with Hailey for almost a week and a half, displaced hours away from our home, and hundreds of miles from our families (my husband is in the Army, and we were stationed very far from our families). Thankfully our families were able to fly and be with us while we went through this traumatic time. When we came home with Hailey, hospice care was provided to us. A hospice nurse came every day to check on her and us. At home Hailey had a nasal cannula and oxygen tank, a feeding tube we were taught to use if she began to have problems with the bottle, as well as pain medication, and we monitored her closely. We spent our days at home holding her as much as possible. After over a month, as doctors predicted would happen eventually, our sweet girl developed an infection that quickly ran through her body and caused her to pass away after about 24 hours of its onset. Our daughter Hailey lived for 36 days. 

While Hailey was alive and after she died, our faith in God provided us with strength to carry us through the days and allowed us to see the blessings in the darkest time of our lives. We found additional comfort and support through our family and friends, through online child loss groups, and through sharing our family’s story. 

Additional note: Trisomy 18 can be diagnosed when the baby is in the womb; however, in our case, screenings missed it. We had a genetic screening done early in my pregnancy with Hailey. Part of the screening suggested she had a slight increase of fluid behind her neck which may be an indicator of a chromosomal disorder like Trisomy 18, but not always, and the other part of the screening which required blood work came back normal, which suggested she did not have a disorder. With the two results of the screening together, the doctor determined her screening was negative for a chromosomal disorder, and that proved to be incorrect in the end. 

Written by: Kristin Vanderlip, Division Coordinator of Hailey's Hope with Project Sweet Peas.

---