Our daughter Kelsey was born on April 20, 2018. We picked a name we felt was the perfect complement to her "lucky" Irish heritage (I'm Irish), and chose the name Kelsey because it means "brave" in Gaelic. Lucky and brave--very soon we would realize how much she'd need every ounce of those attributes.
During my pregnancy we found out that she had a rare condition called "gastroschisis", in which a portion of the intestine sticks out of the belly wall. It occurs only once in about 4,000 babies. But my husband and I were told it's not the end of the world because these cases have an excellent prognosis and are corrected at birth with only some minor belly scarring. As she developed in utero and very near term, amazingly the gastroschisis completely reversed itself and her belly closed up normally. We were excited at first because everything miraculously seemed to be back on track. But this type of spontaneous reversal, called a "vanishing gastroschisis", is actually a rare complication of gastroschisis that may result in severe damage to the gastrointestinal tract. When Kelsey was born, she looked perfect from the outside.
Unfortunately, things on the inside were not so perfect. Her belly was distended and radiologic images showed a massively dilated small bowel. The vanishing gastroschisis lead to twisting or strangulation of the once eviscerated bowel. This resulted in the even rarer condition of what is called "vanishing gut syndrome." A large section of the bowel lost it's blood supply and literally disappeared. Mortality is as high as 70%. It's so rare that between the years 2000 and 2013 there were only 13 cases reported in the medical literature. Treatment is aggressive and involves a extensive surgery to try and lengthen the remaining bowel. But this too often fails, resulting in the need for an organ transplant, which itself has an exceedingly high mortality rate. Of those 13 cases reported, the babies needed to be fed through their veins by total parenteral nutrition (TPN). Thus, even if they escaped needing a bowel transplant, they then faced the terrible complication of TPN---complete liver failure. So of these cases, 12 were born alive and 7 had aggressive treatment. Only two cases were confirmed to still be alive in infancy.
You can imagine our shock and fear when we found out that our seemingly perfect little Kelsey had this horrific diagnosis. I cried and cried. I mean what else is a mother to do with that kind of news? No sooner was I holding Kelsey in my arms, then I was being told she needed to have an immediate bowel surgery to decompress the distention and lengthen what they could of what little intestine they had to work with. It was so surreal to me because she looked so perfect, so beautiful, and so comfortable on the outside.
This is where the bravery part comes in. If she was going to survive, she would have to defy the medical odds. When the procedure was completed, she was brought back to the intensive care unit, and there she would stay, enduring a multitude of procedures. She ended up with what's called a "G-J tube" that sticks out of her belly where she is fed. In addition, she has what's called a Broviac catheter sticking out of her chest through which she gets her life sustaining liquid feeds. We had our ups and downs in the NNICU. At one point Kelsey went from taking a small amount in a bottle to refusing to let anything touch her mouth without vomiting. It was so heartbreaking because she was so hungry at times, but with every feed, Kelsey would choke and vomit. As tiny as she was, you could see her frustration. Watching her in my arms and wiping away her little tears was indescribably heart wrenching. To make matters worse, at one point we were told by the neonatologists that she had "failure to thrive" because she was not gaining enough weight and her bowel was not working yet. As days turned into weeks, things turned darker. Kelsey's bilirubin (a marker of liver function tested in the blood) started to elevate. If it continued to elevate we’d have to start talking about liver failure and the need for a transplant.
But our brave Kelsey kept toughing it out, enduring obvious pain and discomfort day after day. It was literally killing me to watch her this way. Then, I don't know how to explain it, after one particular day of retching in pain I swear she looked at me with steely eyes, almost reassuring me, showing me her strength. Was I imagining this? Was this perception of bravery in this little morsel of mine nothing more than a delusional projection on my part? Maybe. Maybe not...All I know, is that day something stirred in her. She seemed renewed, as if a blessing touched her, and she fought on. Day after day, as the weeks turned into months, something lucky but maybe miraculous started to happen. Her bilirubin inexplicably completely normalized. Her liver, for at least the time being, was and is fine. The doctors were astonished. Also she began to tolerate some oral feeding. Soon she began actually taking a small bottle and now even has some rice cereal. The nurses were stunned. It's difficult to describe how much this defied the odds we were given. The doctors were shocked. They simply could not fathom how she had come that far with what little she has to work with, coupled with what was such a grim prognosis. As a result, after 144 days in the intensive care unit, on September 10, 2018, she was finally transferred out of the unit and into a regular pediatric room. Though she still has her G-J tube sticking out of her little belly along with the Broviac catheter in her neck, at least there she now gets to enjoy more toys, other children, more visitors...sunlight.
Now for the money part and why I'm doing a Go Fund Me page for Kelsey. While my husband works and only gets to visit Kelsey in the hospital on the weekends, I've been there every single day, holding her, touching her, comforting her, and showering her with every ounce of love inside of me. While we have fairly good health insurance, as I'm sure you might realize, just one night in the intensive care unit can be thousands of dollars and insurance never covers everything. It's one thing if it's a few days in the ICU, or even a week or two. But imagine what we're up against financially with 144 total days of ICU care of which not all is covered by medical insurance. Compounding that, while Kelsey is out of the ICU and in the pediatric ward, the bills keep coming. Lastly, when she is released home, if she ever has a chance of developing enough strength to move to the next phase, she will need in-home nurse services, continued gastric feeds around the clock administered through the G-J tube in her belly, total parenteral nutrition (TPN) to offset the nutrients she still can't absorb, and a host of special medications the doctors prescribe. The hospital is trying to get her home as soon as possible even if she has to come back for frequent visits. They feel this is the safest place for her to protect her from hospital acquired infections and other complications that occur over protracted hospital stays. While Kelsey continues to defy the odds, there's still the looming possibility that she might be faced with an intestine and liver transplant as long as that TPN is still running through her veins. In the immediate future, our plan is, if things continue to improve or even remain stable, we agree with her doctors that the best place for her to continue her miraculous healing battle is at home with her family around her. Once we get her home, the next step will be to try to increase her tube feeds and what little she can tolerate orally to offset enough of the intravenous feeds so we can stop it altogether. That may take months or even years. Then, if finally off TPN, Kelsey will be left with just the oral and tube feeds but will have avoided an almost always fatal liver-intestine transplant. As oral feeding hopefully advances in the years ahead, the hope will be to discontinue the tube feeds as well, so she eats like the rest of us. We found an amazing feeding specialist that will be instrumental in her progression towards oral feeds and we intend to enlist her on a weekly basis. This specialist, among others Kelsey will need, will not be covered by insurance. Kelsey's future support deeply concerns us. The potential of a lifetime of medical expenses for her is daunting for us and hangs over our heads. But for now, that will be another chapter. Right now she fights with all her strength, we do all our hard work every day, she has the help of the amazing medical staff, the support of family and friends, and the immense power of the faith we have.
Our many friends and family keep asking what it is they can do for her. If Kelsey continues to receive top-level medical and surgical care, we have faith she will continue to defy the odds and become as normal a little girl as her condition will allow. With enough money in the coffers, we'll be able to afford years of this caliber of care and any additional procedures she might need, as well as having enough remaining to give her the additional support she'll need as she grows. While neither of us has ever asked for money before, we both feel that if ever there was a time for us to do just that, this is it--Our Go Fund Me page for Kelsey.
Please help our brave little miracle baby Kelsey defy the odds she was given, and make her the luckiest little baby in the world. :)