Looks like son #2 has HD too

Hirschsprung's Disease
#1

This sucks so much and I was really hoping to have satistics on our side, but it looks like my newborn has HD as well.

My 1st born was from another father, so I was hoping that things woul dbe different, but 17 yrs later I find my self w/ a new born that is not pooping and is throwing up his feeds. He was admitted to NICU @24 hrs old.

The only good thing is this time the doctors had a clue of what could be going on. If I did not already have one child with HD I know for a fact that Max would not have been given a biopsy this soon/ (the surgeon was 1st thinking it was cystic fibrosis (sp?) eventhough I said I had tested Neg w/ they did the prenatal testing) They gave Max a barium test and it was neg, but I told that my 1st born passed that test too, so we needed to do the biopsy. They had to coordinate w/ another hospital to get the “gun” they use for the test.

then max’s belly started sounding better after the barium test made him pass some poo, so they started him of food again and he was doing well, until last night (he turned a wk old last night)

The results are not 100 % complete, but leaning towards HD, big surprise.

I can’t believe it I did this to another child. I knew there could be a chance, but really was thinking that the chances were low, not too many families have 2 children w/ HD.

At least Max will not go misdiagnosis for so long like Michael did, and it sounds like they could do a pull through, that was not even an option back then for Michael, I don’t believe they were doing that surgery 17 yrs ago.

this just sucks so much. I was hoping to be able to come to this sight and tell families look…I had a 2nd child and he was HD free and give hope to others that were fearfull of going through this for a 2nd time.

#2

You did not, in any way, “do this to another child”. There is so much peace in the fact that life is not in my control, and that even though I myself, have two children with HD, it was not my plan nor anything I did.

Feel free to read about our kiddo’s and our experiences as a husband and wife, as well as mommy and daddy.

Best wishes…
Warmly,
Lisa Busha

#3

I am so sorry you feel like you “did this to another child”. I am an adult (34) with HD and my brother (30) also has HD. I am always so sad when families do not want to have another child because of the possibility of that child having HD. I am so grateful to be alive and even to have HD. It has formed the person I am today. I am a strong person with a VERY full, relatively “normal” life. I am married, have two adorable boys and work and play and everything else others do. I also have pretty severe HD and have an ileostomy that may or may not be there for life. I would have loved to give birth to a child (not an option in my case) and was very aware that my child would have HD and that was ok. Because life may be challenging at times but if it is not HD it could be something worse.

I have a dear friend that chose to adopt a child with HD. I am so honored to have then as friends and them being willing to take on the risk and fears of having a child with HD.

And I know what it is like to be both a person with a chronic health condition as well as being the parent of a child with a health condition. My new son (adopted from China) has imperforate anus and will be facing health issues all his life. Some of them may be more cumbersome than anything I have had to face on a daily basis.

I am praying for your son to feel better soon and for you to have the strength for any treatments forthcoming.

Crystal Knoll

#4

Dear Crystal,

Thank you so much for sharing a little of your story. It is extremely encouraging to hear. I am 34 as well, and have two children with HD but do not have it myself. I am so grateful for the spirit of both my children which has indeed been shaped by their medical issues. We have always known that they are dealing with HD for a reason and will be able to use their experiences to encourage others and give them hope.

Thank you once again for sharing.

Warmly,
Lisa Busha
HMDSN

#5

you guys make me feel better. My oldest son has had no problems w/ his HD since his last surgery, for the longest time we kinda just forgot about it.

I feel so bad b/c of all the pain my little one has to go through right now, the IV’s, the tummy aches, the throwing up,not being able to eat, but being hungry, and most likley the surgery (we still don’t have results 100% yet)

Hopefully Max will do as well as Michael has once everything has been completed, but in the mean time it just sucks to have a new born in such pain and not be able to do much for him, but swaddle him, give him a pacifier and wait for the doctors to come up w/ a game plan.

#6

Lisa,

I checked out your story on your children. That was really nice. I have a 4 year old daughter with HD, who had pull through at 3 months old, but I also have an 11 year old daughter who doesn’t have it. So I suppose its the luck of the draw.

I am from Massachusetts and also noticed you came to Children in boston. That is where my daughter Anna had her surgery with a wonderful doctor… doctor fishman. Although now she has been having horrific belly pain at times they say it’s not related or they think not, but she holds a lot of poop inside and needs to do a clean out regularly. Take care.

Beth

#7

Hi Beth,

Yes, we did come to Boston but actually saw Dr. Flores at Newton Wellesley Hosp. They were all so wonderful there. We just loved the area too. Hope we can go back for a visit someday. It was so long ago and we were so young. Its funny to look back at those pictures as we look like babies ourselves!

Your daughters belly pain sounds familiar. My 8 year old daughter still suffers from some belly pain but its due to the fact that she withholds her stool until she absolutely has to go… and I’m sure that’s pretty uncomfortable! It’s a daily battle trying to keep up on the stooling pattern and keeping her cleaned out.

Anyway, thanks for the email. Its great to meet you!

Warmly,
Lisa Busha
HMDSN

#8

I’m so very sorry… I hope and pray that all goes well with Max’s surgery.
Truly,
Mary