Wednesday, July 2, 2008

Hirschsprung's Disease

An update on our baby boy:

He continues to grow well and seems quite happy. He has recently been diagnosed with Hirschsprung's Disease, which is a genetic birth defect of the nerves of his colon/rectum that was making his belly bloat and causing him increasing discomfort. It is fairly rare (1 in 5000 babies) and it has some risks of serious infection, but the good news is that is can be cured with surgery. Although the X-Rays almost certainly show Hirschsprung's, we will go to MCG Children's Hospital in Augusta tomorrow for a biopsy required to confirm the diagnosis. Then hopefully he will have the surgery in the next month or so.

While we have a healthy level of concern, we are very optimistic. We were very impressed with the kind and competent surgeon who will be caring for him. We are doing washings of his colon several times a day and already he appears to be feeling much better. It is a joy to watch this boy grow and I am already impressed with his little personality. We are certain that everything that happens is in God's gracious will for our son. We will be busy over the next month with many trips to Augusta. I may not be able to be in touch with everyone personally so I aim to use this blog as a way of keeping everyone updated on TMD's care. Keep him in your prayers and stay in touch.

10 comments:

Christy said...

I'll be praying for you all. I'm thankful that it's something that can be corrected. Please keep us posted when you can.

bobw said...

so sorry to hear this about little T. we'll be praying. we recently had a brush with a major health issue for our youngest. thankfully it turned out to be nothing, but even waiting to hear was heart-wrenching. hope all turns out well for all of you.

Lisa said...

Wow. Makes me realize how much I take my healthy babies for granted. We will pray for TMD and his tired parents.

Frederik said...

Just to tell you our son has Hirschspung's disease as well. And in his case: the worst form: meaning the complete colon has been removed in 3 times, therefore, a temorary ileostoma has been installed (and removed after a few months).
He's 1.5 years now, and doing great! 1 advice between all the doctor's visits: don't forget to enjoy your kid!

Sharon said...

Hi! I recently gave birth to a beautiful baby boy who's also positive for hirschsprung's. My first baby so you can imagine how lost I felt when I first found out. But reading and hearing testimonials from other parents with kids with the same ailment has helped me and my family stay strong and hopeful.

Norma said...

Just wanted you to know my son was diagnosed with Hirschsprung's Disease 24 years ago at birth. The doctors wanted to do surgery right after birth but I was afraid of my baby having surgery etc., so trusted me and we watched him closely for 9 months and I could only breastfeed him (throughout that 9 months I did have to help him with removing some stools). I do think that this might be rare that the doctors would do this. At 9 months old he had his surgery at Children's Hospital in Washington D.C. his sugeon was Dr. Kathryn Anderson. She was great. He had to have a colostomy then at 12 months he had his second surgery for the closure. He had one third of his colon removed. He is very healthy now and never has had any problems. I was a very scared and nervous mom when they told me what he had. I had never heard of Hirschsprung's Disease. Good luck to you on your little baby.

Surgeon said...

Hirschsprung's disease is curable condition. It is because of absence of ganglionic cells in some or all the parts of colon but if treated properly the child can lead normal life.

Anonymous said...

Hi im 15 and i have hirschbrungs. I have been living with it just fine. I know it's different for everybody but i don't have many of the symptoms. I was diagnosed at 7 months, I had my first surgery at 8 months, and second at 1o months. It's hard because people think it's gross because the surgery effected my bowl movements. But my life really hasn't changed! I didn't know how rare it was until now. Your son is special. Best wishes!
~Emma

kahlenramos@yahoo.com said...

i hope my daughter's case in not worst she was diagnosed with HD last oct 28,2010...we aRE waiting for the physicain until nov 2 to see her case..well she was very fat baby until 1 yr old. i can tell she slowly loosing weight and has chronic constipation. it takes 4 to 5 days for her to eliminate stool that is so hard she grunts and cries.can i ask is she going to go alot of surgery life does she need to go that colostomy thing

Shaye said...

Shaye: My grandaughter is 5 and they think she has Hirschsprung's disease. She has to go through some tests. She has periods of constipation and vomitting. What are the side effects of this surgery I wonder? What are the % of outcomes?