December 9, 2008

Dylan's journey from birth with Hirschsprung's Disease




All expecting parents have the vision and hopes of having a healthy baby. On the day that Dylan Chase was born (March 27, 2006) he was perfect and seemed as healthy as any other newborn baby. He was a healthy weight of 8 lbs and 7 ozs and 20 inches long. His father and I were ecstatic to have a healthy newborn baby boy, or so we thought.

Day two of Dylan's life began to turn from healthy and normal to odd and uncomforting. The nurses couldn't get him to eat and here he was not even 24 hours old and hadn't passed meconium, which is the plug that holds in the stool while the baby is in the mother's uterus. The nurse had came to me and explained that if Dylan didn't have a bowel movement by the time he was 24 hours old they would have to move him to the NICU. I was a little concerned, but in all honesty I was clueless at the problems that were yet to come, my thoughts were "he has too poop, all babies poop". But that was not the case at all.

We enjoyed our time with Dylan, holding him, cuddling our newly born baby. We never put much thought to the possibilities of him going into the NICU. We went on as though everything was normal and looked forward to taking our new baby boy home the following day. Little did we know that wasn't going to happen.

The day went on, still no bowel movement and still not feeding at all. That evening a doctor from the NICU came in to talk to us, he explained that Dylan should have already had a bowel movement, should be eating, so he was gonna take him to NICU to keep a closer eye on him. By this time I was concerned, but hoped things would turn around on their own over night. That evening the specialist then returned explaining if Dylan didn't have a bowel movement by the next day (meaning he would be 48 hours old) they would have to send him to UK Children's Hospital. This indeed opened my eyes that something was wrong with my baby, the question left was what is it and can it be fixed.

Waiting over night was worrying, I called the NICU several times (annoying them I'm sure) asking if Dylan had yet had a bowel movement. All through the night I got the same dreadful answer "no, nothing". After finally getting some sleep I was woken by the specialist once again, this time saying they did x-rays and there was dilated loops in Dylan's large intestine. Of course I had no idea what that meant, and questioned him with everything that came to mind. He then told me that the signs and symptoms Dylan had was pointing to a rare disorder of the large intestine called Hirschsprung's Disease. I didn't have to hear anymore before bursting into tears, the thoughts running through my head were indescribable, "disease, how did he get a disease, did I pass something on to him, did I cause this". The scariest moment in my life, I had no idea what it was, if it would cause my baby to die, if it was curable, would he be sick for the rest of his life. I had so many unanswered questions. Even the specialist couldn't answer all the questions I had, he, being a specialist still didn't know much about it himself. The only thing he could tell me was sometimes it can be treated with a colostomy. He stressed how important it was to get him to UK and get this diagnosed which was something a pediatric surgeon had to do, and there were no pediatric surgeons at the hospital we were currently at. Dylan left that evening by helicopter, our family cried as we watched the helicopter leave. There were so many thoughts and feelings as they flew away with our baby...all we could do is pray that God would watch over him until we could get to the other hospital to be with him. I prayed for God not to let anything happen to my baby not without his mommy there to hold him, and to reassure him everything would be ok.

After arriving at the new hospital Dylan was on antibiotics and immediately the new doctors, specialist, and surgeon began testing. But we were still not out of the woods, but thankfully at a hospital that was more educated and had the abilities to care of such a rare disorder and sick baby. The first day there, they mainly did test, x-rays, and enemas to try to get Dylan to have a bowel movement. By day two Dylans colon had had enough, while out getting something to eat and then back to the hotel to rest up and shower, we rang the hospital to check on him. I will never forget the nurse telling me "Mrs. Johnson, the doctor has been trying to reach you" she then put the doctor on the phone. Seems while we were gone, Dylan had become very sick. They performed another x-ray and found that his bowels had perforated (torn apart) and he was rushed to emergency surgery. Of course we ran straight to the hospital and into the surgery waiting room. After what seemed like eternity, we saw Dylan being wheeled by in his crib, the surgeon then came and spoke to us. He began telling us that he had to fix a tear in the bowels and that it was still not known what caused the tear. At this point we didn't have the for sure diagnosis of Hirschsprung's Disease and had been told it could be a few other things such as a dead part of the bowel that didn't develop right.

It was a long road to recovery, two weeks to be exact. Since Dylan was a small baby, and had such a big wound from surgery, when he cried his wound burst open. Instead of fixing it the surgeon thought it was best to leave it alone, but to keep it clean and covered. Dylan began to tolerate feedings, and began stooling out of his stoma (the part of the intestine brought through the skin to make the colostomy so his body could dispose of stool). He was in fact improving. Finally after two weeks and five days (and learning to dress and care for his wound) my baby finally got to go home from the hospital for the first time. He was so little almost like a preemie, he had lost weight with the surgery and not being able to feed. We took him home and began nursing him to health and helping him get use to life away from the hospital.

Dylan did fine, growing, learning, and developing like a normal infant. His colostomy was alot for me to take care of, he couldn't wear colostomy bags for a month or so due to his wound needing cleaned and dressed everytime he would have a bowel movement. I did it with pride though, knowing this would be temporary and we just had to have the colostomy long enough for him to grow and gain weight so he could have his corrective surgery which is called a pull-thru, to reconnect the good intestines. In the mean time we traveled back and forth for check ups with his surgeon in Lexington who performed several biopsies. We finally got a diagnosis of Hirschsprung's Disease in June, which was a sigh of relief that it wasn't anything else but still we knew there was gonna be another surgery which was scary to think about.

~This concludes Part 1 of Dylan's journey with Hirschsprung's Disease~

This story will continue in sections because it is so long and I only have so much free time with having 3 kids at home....best wishes to you that are reading.

4 comments:

  1. It is so weird to read and hear the same disease but way different story on events,doctors' opinions,etc leading up to diagnosis.

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  2. Hello
    I just came across your blog, and there are so many similarities when I read it, and it scares me to death.
    I'd love to email you, not sure how to contact you from this blog, so if you do receive this comment, and you have a few minutes (we have 4 kids so I know how rare time really is) please email me at ekk224@hotmail.com

    Thanks, and take care!

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  3. thanks for reading...My direct email is catrina_lynn@live.com if you would like to contact me.

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  4. Hi Catrina,

    Thank you so much for sharing your story with us as my daughter has been diagnosed with this disease. We are now waiting for surgery to happen.

    Noman

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