CHASE
Chase was born 1-1-05 at 2:28 pm. It was a difficult pregnancy. I had been put on medication to stop premature labor. When my water broke I had to have an emergency caeserian. His heart rate would drop with every contraction. As it turned out if I had had him vaginally because of the placenta not being attached right either one or both of us could have died. Imagine hearing your doctor say "Oh, that would have been tragic." during the birth of your baby. As far as we knew we were to have full term 7lb baby. But instead we had a tiny 5lb 7oz one. He was only 18 inches long. The hospitals Pediatrician and my OB said that there was no way he was full term and decided he was at least 4 to 6 weeks premature. I come back to this a bit later into the story. He also had a slight case of hypospadius and had surgery at a year old. My final day in the hospital my mother called to tell me that CPS wanted me to come into their office that day. They had absolutely no reason other than my age. When we had our picture in the paper, they mentioned my age. Not a lot was said and we went home. It was completely pointless. I have had a very hard time of early motherhood. First, being a teen mom and then having the feeding problems among other things. He was allergic to so many formulas and even my breast milk. Instead of spitting up, though, he had diarrhea and sever diaper rash. I tried every ointment known to man and even put Maalox on his bottom having his Ped suggest that he might had too much acid in his bowels and this might work. At a few months old he was hospitalized because of the diarrhea and was put on Neocate formula which helped a bit but not completely. And then I was lucky if I could get him to drink an ounce per feeding. He was also put on IV fluids while in the hospital. After coming home I took him to his Ped where I was told he had lost one ounce. He was going to his doctor once per week because of his weight. I asked if it was normal to lose weight after being on fluids for so long and I was told it was. But then just a few days later Child Services called and had me come in for a meeting where they blamed me for his diarrhea, weight loss, him being failure to thrive, and diaper rash. I left the building without my son. It was the hardest thing I ever had to go through. I literally collapsed in the elevator and my fiance had to half carry me to the car. The next day I went to court and my grandparents got guardianship of him. I was unable to see him until a few weeks later when I was allowed to move in with them as well. His father wasn't so lucky; he was only allowed two days a week for only two hours. I was keeping track of every thing he ate and even woke him up every two hours to feed. I also had to wake him up during the night because he would just sleep if I didn't. A couple months later I woke up one morning to find my baby soaked in diarrhea. He was lethargic and his soft spot was sunken in. I immediately told my grandparents that I wanted him taken to the hospital. We were there for a few hours when the doctor finally said that he was fine and wasn't dehydrated. I straight told him he was wrong and went to Chase's ped where she sent him to St. Vincents hospital by ambulance. I was told there that he was severely dehydrated and had we been much later he might not have made it. While there he was seen by a Geneticist, He was tested for cystic fibrosis which came back negative. At |
only four months old the geneticist mentioned that he had an odd shapedhead. After being discharged we went to the geneticist four or five times over the next few months. He even had an MRI but no diagnosis was ever made. He was also sent to a gastroenterologist who decided to have Chase put on NG Tube feedings. I was finally getting his tummy full of 20-23oz even if he only took a fraction of it by mouth. He had the tube for two months. At roughly around 7 months I was able to move from my grandparents to my father's. My fiance was also allowed to move in. We still had weekly visits from three different people to monitor my parenting. When Chase was a little over a year old, I retained full custody of him. At that time, I switched him to whole milk and I thought for sure his rash would go away and he would gain weight. I was disappointed. On my own I switched him to a lactose-free milk and finally his rash cleared and the diarrhea lessened. His problem all along was that he was lactose intolerant. Except for the weight, it didn't help. He was only 12lbs and almost two. Chase looked maybe 10months old. Doctors and people were always commenting on his odd features. His triangular shaped face, small mouth and under bite, the low set rotated ears and central head bossing. Yet nobody could give me an answer as too why my child was so small. That is when thoughts of dwarfism creeped into my mind and I researched a lot of types but nothing fit him. I asked Chase’s pediatrician for a referral to an endocrinologist. His first visit we were simply told to come back later and see if he might hit a growth spurt. Six months later I went back and expressed how concerned I was about his weight. He had his blood tested for hormone or thyroid problems but every thing was normal. He also had a bone age x-ray which did not come back normal. It was aged at 15-18mo. Chase was 24months. We recently went back a third time and the doctor finally mentioned a syndrome. He was 2yrs and 7mo. He was and still is 18lbs and 31 inches. He has been below the fifth percentile on both charts practically his whole life. This is when Russell-Silver Syndrome was brought up. His endo suggested that I take him back to his geneticist to confirm. Having a possible diagnosis I researched RSS. Then when I saw a picture of a little boy with RSS my mouth kind of dropped. He could be Chase's brother they looked so alike. One month later we saw the geneticist. I told him what the endo had said about RSS. He looked at Chase for only a few minutes before turning to me and saying that he most defiantly had RSS. Even though I knew in my heart already, it still came as a slight blow. I did cry a little when the doctor left the room. It is hard to deal with people's questions and stares. Especially when some act as if what he has is not a big deal. But having new found friends at the Russell-Silver Support site truly helps. Having people who understand and know what you are feeling makes all the difference. Coming back to him being premature; I don't think he really was. My orginal due date was Janurary 7th. I think that the pediatrician at the hospital just assumed that because he was so little, being premature would explain it. I'm sure she never even thought of RSS, if she even knows what it is. Chase's currant doctor didn't even know there was such a syndrome until I told him what Chase had. Right now we are just trying to get Chase to gain weight. He was put on Resource 1.5 and Duocal. After he gains some, the doctor told me we will discuss growth hormones. He will need a lift in one shoe as one leg is longer than the other and eventually he will need some dental work done to his under bite. Now at 2 years 9 months Chase weighs 19.2lbs and is 31 inches tall. He is very active and happy. We are having some feeding issues but the Resource helps supplement the calories he won't eat. The road ahead won't be easy, I know. But with his parents love and support, I'm sure Chase will face life bravely and with confidence knowing even though he is different, he will be forever perfect to those who love him. Jackie Knutti ~ Proud Mother of Chase Taylor Clanton |
