An Open Letter for Hirschsprung’s Disease Parents

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Dear Mom and Dad,

I know you are scared and probably feel more alone than you ever felt. Hearing your precious little one has Hirschsprung’s Disease is that last thing you ever thought would happen. I remember all to well…

I am not going to pretend, having a child diagnosed is not only scary, but lonely. Even if you are surrounded by family and friends. You wonder, is it something you did? Something you didn’t do? What could you have done differently? Especially for us moms. You go over every poor decision you made while you carried your baby and think, “is that what caused this?” The guilt can be deafening. It can swallow you up. The ironic thing is there was nothing that we did or could have done to change things. But that doesn’t really matter does it? We are still rattled with guilt.

So, the first piece of advice I have is to let it go. I know it sounds hard to do…and it is. For whatever reason, our little one was born with Hirschsprung’s Disease . You have to move past the why and focus on the what now. Beating yourself up does not help your baby or you.

Finding out our daughter, Faith, has Hirschsprung’s Disease was both devastating and a relief at the same time. No one wants to hear that there is something wrong with their child.  Like most people, we had never heard of Hirschsprung’s.  I would like to say that we were full of questions, but honestly, we weren’t. It was all so overwhelming that we did not know where to start with the questions.

Faith had problems pooping from the very beginning of life.  Her nurse practitioner was stumped.  She tried x-rays, scans, occupational and feeding therapy, testing and more testing.  Faith was constantly constipated and not gaining weight. She was 6lbs 9oz at birth, and at 2 ½ months she was only 7lbs 1oz.   Finally, her nurse practitioner had her admitted to the Children’s Hospital as failure to thrive.

After a few days of observation, the surgeon visited us and wanted to test her for Hirschsprung’s Disease.  I specifically asked him if he was testing her for this because he thought it was HD or was he testing her to rule it out.  He told me to rule it out.  Faith was 2 ½ months old.  Normally, but not always, an HD diagnosis occurs at birth because the newborn does not poop in the first 24 hours of life.  But Faith did poop.  Her surgeon assured us if it was HD, it was a mild form of it. Yet, that would turn out not to be the case.   It turned out that Faith has Total Colonic Hirschsprung’s Disease (TCHD).  All of her large intestines and part of her small intestine were affected.

We now had a name to what was wrong.  It was awful knowing something was not right but not knowing what it was.  So, as awful as it was to hear that Faith had HD, it was a huge weight lifted off our shoulders.

What is it like parenting a child with HD?  What can you expect?  Well, in many ways it is just like parenting a child without HD (I assume as Faith is my only biological child). Just like any other child, there are things she likes and things she doesn’t. Sometimes she listens and sometimes she doesn’t. She loves to play, eat, watch tv, and all the normal things kids her age like to do.

When your child first gets diagnosed, you wonder what the effect will be on their daily life. I remember worrying that she would not be able to swim. And my husband made a comment that she would not climb trees.

But, we quickly decided that she will do any and everything she wants to do, even if there needed to be some modifications.

So here are just a few suggestions to help you get through those early days, weeks and months of your child’s diagnosis:

  • Join Facebook groups and pages dedicated to HD. There are a few.  My favorites FB groups are Hirschsprung’s Disease Families & Friends and Hirschsprung’s Disease Help group.  They are the most active groups on Facebook, and someone is always willing to help.  The great thing is that there are people on there from all over the world. So, when I have a question at 3am, there is always someone from across the globe logged on ready to help. One word of caution. You will read a lot of stories about failed operations, illnesses, and even losses. But remember, these are SUPPORT groups. People who do not need support are not usually the ones posting or asking questions.
  •  Know that your child is unique. What works for one child, may have the exact opposite reaction for another.  This disease is trial and error.
  • The most important tip I can give to any parent dealing with a new Hirschsprung’s  Disease diagnosis is to advocate for your child – at all times. Remember, you are just as important as the surgeon, GI doctor, nutritionist, ostomy nurse, and any other person that might be on your child’s medical team.  This is your  child. More often than not you know what is best.  Yes, they have the medical training and may even be an expert on HD, but that does not make them an expert in your child.  Only you are.
Faith going for her colonectomy and illeostomy. She was laughing and smiling. She said, “don’t worry Mommy and Daddy, God’s got me!”
  • The Ostomy. Some Hirschsprung’s Disease babies will have an ostomy placed, some won’t.  This is one of those individual decisions.  Talk to your doctor as to why they are choosing to place an ostomy or not.  At 2 1/2 months, Faith had a colectomy (all of her large and part of her small intestines removed) and an ostomy placed.  Her doctor explained to us that he felt it was best for her because she was 2 ½ months old.  Her poor intestines had been fighting all that time and needed to rest.  The surgeon also stated that since she only has a portion of her small intestines left, that he wanted her to grow some more before he performed her pull-through surgery. Faith is now a little over two years old and still has her ileostomy.

I am not going to pretend that life will be a walk in the park. It won’t be. There will be rough days and nights. But it does get better. Our children are so resilient and strong. Through all the surgeries, illnesses, doctor appointments, and testing Faith remained positive and happy. This HD life is the norm for her. She doesn’t know any different. Every day, I take a page out of her book and live life to the fullest.

You got this Mom and Dad!

Sincerely,

Keina

An HD mommy

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