Nixon and Hirschsprungs Disease | Where we’re at
We were in our GP’s office today, and as he turned his monitor around to show me some test results I saw the words in bold, accented in fluorescent yellow; HIRSCHSPRUNGS CONFIRMED.
I already knew this of course. We ‘knew’ a month ago when the surgeon called and said “Nixon has Hirschsprungs Disease”. We knew last Monday after baby’s second round of biopsies failed to show ganglionic cells where they should be in his lower bowel. But I hadn’t seen it in black and white and hence, I don’t really think I had felt it.
So. Nixon has Hirschsprungs Disease.
Basically, Hirschsprungs is a congenital disease (meaning it was present prior to birth) resulting in a lack of nerve cells in some or all of the large intestine. Nerves are essential in causing muscles to relax and contract, so an absence of ganglionic cells results in a large intestine that can’t move waste down the line.
The only fix; surgery.
Many of you have followed my pregnancy and our lives over this past year, you may remember that Nix had a pretty traumatic birth, that even at 10 lb 2 oz / 4.52 kg he was hospitalized with Failure to thrive, he struggled to feed and had a hugely distended belly. But, he did pass meconium after birth. I had never given any thought as to why every medical professional asks the question of every baby, “did they pass meconium?”. I now know that failure to do so is an early indicator of Hirschsprungs.
So Nix flew under the radar for about 4 months until we started experimenting with solids. This became the season of month long stretches between bowel motions. He was never in pain or seemed bothered, but all of the usual remedies failed to help him. The only thing that would get him to poo was a suppository.
Fast forward to today, and my poor baby has chronic diarrhea multiple times each day, between 3 and 5 huge blowouts. I’m about at the end of my rope with exhaustion and worry and his pull-through surgery is scheduled for Monday. This is where they will remove the diseased portion of his large intestine and reconnect the plumbing, hopefully without the need for a colostomy.
Holy shit.
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Hugs hugs and just more hugs
Melissa – sending massive hugs, lots of love & plenty of prayers for next week. Thinking of you, Dave, Ethan and of course Nixon. xxx
Oh Melissa, I wish I could give you a big hug right now. Having had a bubba go through (albeit much more minor) surgery at a young age, I can sympathise with how you must be feeling. You’ll all be in my thoughts on Monday and beyond xxxx
Thinking of you all and hoping for a quick recovery and a much easier time in the future. x
SO much love and prayers coming your way xxxx Big GIANT hugs xxxxxx
My heart goes out to you and your family Mel, especially your lil man. All the best for a successful surgery on Monday. Xx
Hoping that they don't need to remove too much of the intestine and that he then goes from strength to strength, Melissa. Shoo-ee. Sending good vibes to you and your family. x
Holy shit… Hugs!
Lots of hugs to you Melissa! Been thinking of you & Nixon soo much. Xoxo
Hi Melissa
So sorry to hear about your son. I to have Hirschsprung's (HD) but slightly older at 62. I also run a support group for parents like yourself. Our website is http://www.hirschsprungs.info. We also have a closed Facebook page https://www.facebook.com/groups/159782290709327. To join you need to fill in our membership to try to ensure privacy. We have members all over the world, including New Zealand. Togather with our email group we have over 1,000 members.
If you feel we can help you then either join the group on contact me. Wishing you, Nixon & family all the best. I hope the pullthrough goes well
Gerry
Thanks Gerry have just sent a request for the FB group!
Oh No! My youngest had 2 major reconstructive surgeries in the first year of her life (she was born with a cleft lip & palate). The surgeries were really hard on all of us. My only advice is to keep really busy when he is having the operation and have everything you will need ready and waiting in the room for after the surgery. I spent most of the first days with a baby in my arms most of the time, no time to go and get things. Our wee girl was amazing and made a quick recovery. Here's hoping your boy does the same.
Woah! Thinking of you and little Nix right now. Giant hugs your way! Hoping for the best for the next week, and from there on. xxxx Stay brave! (You are brave! Yes, you are.)
I'm crossing every finger, toe and hair on me that Monday will go smoothly, recovery will be quick and your bouncing baby boy will come back stronger than ever. All my thoughts will be with you on Monday. Best best wishes from one Xtsea girl to another 🙂 xxx
Am a bit behind the ball recently – but goodness…. Really feeling for you all – big big hugs and hopefully only onwards and upward from here on. Big hugs, thinking of you all xxx