Kyle Hall

Kyle at almost 5 mths

Kyle's Story

Kyle was born on March 30, 1998, 5 weeks premature. He was a tiny little guy weighing in at 5lbs 4.8oz. I was so scared when I went into labour. I had been having some problems with my pregnancy and had fought really hard to keep Kyle in as long as I did. When he was born I was so scared that something would be wrong. When he came out he did not make a sound and I thought that he was not breathing. The doctor said that he was just fine. He was very content. He just came out looking all around. He appeared to be very healthy for being so early. I was so relieved. They brought him to me and I got to hold him for a few minutes before they took him away for observation. They said that this was the normal thing to do with premature babies. Kyle checked out fine except he needed a little help breathing.

He only needed help for about 12 hours and then he was on his own. I was so excited because I was finally able to pick my baby up and hold him. The hard part was that it was time for me to leave the hospital and I had to leave my baby behind. I had never experienced pain like that before. My arms ached so bad for my baby. Kyle was my second child. My first son Austin was born healthy and came home with me. The comfort in all of this was that the hospital that Kyle was in was just a mile up the road so I could be with Kyle whenever I wanted and we hoped that he would only be there for about a week.

We were told that all Kyle really needed to do was wake up, eat, and show that he could put on weight by himself. Kyle did not start off as the best eater. All he wanted to do was sleep. I was told that this was normal for a 35 weeker and he had jaundice which made him even sleepier. Finally, Kyle started eating. His patterns were very predictable. He would eat good in the morning, he was not as hungry in the afternoon, and by his evening feedings he did not want to eat at all. He appeared to be doing good though. He was finally starting to put back on some weight. We thought we might get to bring him home soon. On his 5th day in the neonatal unit he acted like his tummy was hurting him. I said something to the nurse thinking that maybe it was something that I ate that was coming through my breast milk and giving him gas. She said not to worry that he would adjust to my diet. I just thought okay my first baby had a lot of problems with gas so I guess my second one will be to.

The next day Kyle really did not want to eat and when they would put food down his feeding tube he would vomit it back up. This bothered me but no one else really seemed concerned. This went on for a couple of days. I just thought maybe they were giving Kyle to much milk. My first baby did this and it was because I had enough milk to feed 4 babies.

On Kyle's 8th day I was hoping to go for his 8:00am feeding and hear the good news that Kyle would be coming home instead it turned into one of the scariest days of my life. When I got there Kyle would not wake up and eat. This was not like Kyle. His 8:00am feeding was always his best. The nurse came over to check and see how he was doing and I told her that he would not wake up and eat. She checked him and his stomach was destined and when she checked his feeding tube yellow bile was coming out of it. She told me that she needed to call the NNP and have her examine Kyle. The NNP came over and looked at Kyle, ordered tests and called the doctor. I called my husband at work and told him that something was wrong with Kyle and that the doctor would be in at 9:00am to examine Kyle and that he needed to get to the hospital. When the doctor got there he told us that it would take about an hour for his tests and that he needed to talk to doctors at another hospital for us to go get breakfast and come back in an hour. That was one of the longest hours of my life. When we got back he told us that he thought from looking at Kyle's x-rays that he might have Necrotising Enterocolitis (NEC). There looked like quite a bit of necrosis in his intestines and he needed to be moved to another hospital across town where a pediatric surgeon would be on hand if he needed immediate surgery.

We then moved to our second hospital. Kyle was 8 days old. When we got there Kyle was examined by many doctors. Everyone had a different opinion. It was quite overwhelming. The surgeon said that he did not see anything on Kyle's x-rays that required immediate surgery. The neonatologist told us that Kyle's condition was very critical and that they would be monitoring Kyle very closely. Leaving the hospital that night was so hard. I was so confused. One doctor made it sound like Kyle was okay and another doctor made it sound like Kyle would be lucky if he made it through the night not to mention that Kyle was way across town and if he needed me I did not know if I could get to him in time. Kyle was placed on NEC watch for 10 days, no food, and was put on a central line and TPN.

All of the doctors would make comments on how if you looked at Kyle's x-rays you would think man this kid is really sick but if you went over and looked at Kyle he looked so content. They could not believe it was the same kid. I remember the second day that Kyle was at Medical City a doctor came over and asked if Kyle had had a bowel movement and he had. Kyle had been having regular bowel movements since the day he was born. I thought that this was very odd. Why wouldn't he have a bowel movement? Doesn't everyone? Finally, Kyle's 10 days were up and his x-rays looked good. The necrosis seemed to be pretty much gone. We slowly got to start Kyle back on food. He started back very strong. He took back to breast feeding with no problem and things appeared great except Kyle was not having bowel movements. I thought hey if you took food away from me for 10 days I wouldn't have one either. So the nurse gave Kyle a little help and he started having some bowel movements again. Kyle progressed up to full feedings and appeared to be doing great.

The doctor told us that if Kyle had another good night that I could roomin with him and take him home. That night Kyle got sick again. He did not want to eat and he started vomiting again. I knew that something was not right. I told the neonatal doctor that was on call and she said he might have a lactose intolerance problem and we needed to take him off of breast milk for a few days and try a different formula. I thought that that was one of the dumbest things I had ever heard. I thought that a mothers milk was made for her baby. I spoke with a lactation consultant and she agreed. She said that the baby could have problems with the lactose in my diet but not with my milk. A few days went by and Kyle would not eat the formula that they put him on. Who could blame him. If it tasted as bad as it smelled I wouldn't touch it either. I spoken with another doctor and he agreed that we could put Kyle back on breast milk. He did think that it was a lactose problem.

Since Kyle continued to still spit up he decided to have the surgeon look at Kyle again. The surgeon looked at Kyle and decided that it was probably a GI problem and called the GI doctors to look at Kyle. The GI doctor came and decided to do a rectal biopsy and check for HD. The first attempt failed. All she could get was poop. She ordered an enema to help clean Kyle out and had another doctor come back the next day to try again. He got a good sample he said and we had to wait the weekend for the results. The results came back inconclusive, he could have HD but he could not. There were no ganglion on the surface but they thought there might be some a little bit deeper in the lining of the intestinal wall. The GI doctors ordered for the surgeon to do a strip biopsy the next day. When our surgeon got there he wanted to go another route. He said that he had consulted with all of the doctors, radiologist, pathologists, neonatologist ect. and they were about 99% sure that Kyle had HD. He could do the strip biopsy but if he did it could ruin Kyle's chances for a pullthrough. He wanted to perform surgery on Kyle instead of the biopsy. He said that they could go in laparascopically, test to see if they found ganglion and if they did they would close up shop and be done. If they did not find any then they would remove the part of the intestine that did not have ganglion and would perform a pullthrough on Kyle. We did not want to do anything that might hurt Kyle's chances for a pullthrough so we agreed to the surgery.

The next day Kyle was scheduled to move to his third hospital and to have surgery. Kyle was one day shy of being 1 month old. The surgeon thought that Kyle's surgery would take about 2 - 2 1/2 hours. He thought that since Kyle had been having bowel movements and had been on full feedings that the segment without ganglion would be very short since this was not the normal pattern of an HD baby. On Kyle's x-rays you could see a change in size of Kyle's large intestine close to his anus. His large intestine was all the same size except for a few inches from his anus where it got smaller. They thought for sure that that was the affected area but they would not know for sure until they got in there. The moment that the anastetheolgist carried my baby away was the hardest moment of my life. I watched him carry my baby away to surgery and I did not know if he would ever be in my arms again. An hour into surgery we get a call saying everything is going good. Two hours into surgery we get a call saying they are doing his pullthrough. We were so relieved. Another hour goes by and we are wondering why hasn't the doctor been up to talk to us. Finally the phone rings and they tell us that they are still biopsying. We were so confused, we thought that they were done. Another hour goes by and they call saying that they still have not found any ganglion. By this time I am climbing the walls. Another hour goes by and they call and say that they have gone as far as they can go laparascopically and that they are going to have to open him up. At this moment I started to think that my baby was not going to make it out of surgery. Another hour goes by and we get a call saying that they have found ganglion and they will be able to perform a pullthrough on Kyle. We were so relieved and so thankful to our Lord for saving our sweet little baby boy.

Our church had gathered and prayed so hard for Kyle at this time and their prayers were answered. I saw at this moment in time just how powerful prayer can be. An hour later the doctor came up and spoke to us. He explained that they had gone in to where the intestines changed size and cut it out and started a pullthrough when pathology called down and said that there are no ganglion, keep going. The doctor was shocked. He thought for sure that that was the affected area. The doctor did tell us for a moment he began to fear that they were not going to find ganglion. Kyle ended up losing half of his large intestine.

Kyle spent the first 5 weeks of his life in the hospital. Now that I look back I am so glad that he did. I believe that if he had come home that he would not have been diagnosed in time since he did not present like a typical HD baby. Kyle is now 5 months old. He is in very good health. He is such a loving, happy, content little baby. His smile and his dimples just melt my heart. To this today his biggest problem is his diaper rash. It looks like his bottom has been burned. We can not get it to clear up. Every time we think it is getting better it starts to flare up again. Kyle's prognosis for the future at this time is good. He is not out of the woods by any means. Our doctor tells us that it will be a few years before we really know how Kyle will be affected. We are just so blessed to have him in our lives and now we feel blessed to have this group in our lives. I would like to know if there are any others out there whose kids have done as well as Kyle has so far. I am so afraid that this is a fluke and that there are still rough roads ahead. I would love to hear from anyone who can help.

I have only known about HD for a short time and any information would be greatly appreciated. It is very scary to not know what the future holds for my son and especially to know that I have no control over it.