My name is Liz Crawford, and this is the story of my son, Malachi Hofer, and his journey with Hirshsprung’s disease.
Born on November 8, 2008, after a lengthy delivery, our dear son, had finally arrived at 10.5 pounds and 23 inches. Strong and hearty with the most perfect hands, Malachi looked healthy and alert. It was not until later that same day I felt like something was amiss.
Suddenly, my son was very tired and uninterested in feeding. The nurses assured me that this was normal as he too had been through an ordeal. However, I could not shake that horrible feeling that there was something else happening. Call it “mothers intuition”, but I remember the moment I knew for sure; I saw it in his eyes. This is where I start to sound crazy but have resigned myself to embrace “crazy”, as it was the only thing that kept me sane.
The following day, Malachi was unable to feed. After several hours of Malachi rejecting everything he was given, including water, the nurse called the doctor on-call for a consultation. It was at this point where my son’s journey truly began. Malachi was moved to PNCU, where babies need constant care. The next two weeks were spent desperately trying to feed Malachi and running a variety of tests came out inconclusive. It felt as though the catch phrase of the day was “failing to thrive”, whatever that meant. We sat helplessly beside Malachi each day praying to whoever would hear us.
I once read that women in some African tribes would hold their sick babies as an attempt to heal and comfort them. I clung to this belief that if I held him constantly maybe I
could “love” him better. A schedule was arranged so that if I had to leave my baby, his father would be there to hold him. There was not a single moment where he was not held. With this, he earned the nickname “Roo” (like “kangaroo”).
It was initially strongly suspected that Malachi had a metabolic issue, but, when that was finally ruled out, we were told that it was time to consult with a surgeon. Malachi had presented some unusual symptoms but the one constant was the ever present and reoccurring bowel issue. He was not having bowel movements and appeared obstructed. I remember the day the nurse arrived from surgery. She was so kind, and calm, and I felt hopeful. She is now referred to fondly as the amazing Cindy. What happened next was both the best and worst moment of my life.
Malachi was going to be transferred to PICU (Pediatric intensive care unit) for observation. Both naive and scared, all I could think of was what the nurses in our prior unit had told me: “The really sick children are in the ICU”. So, what did this mean? I think I had already established that I was embracing crazy, right? Well, after 24 hours in ICU Malachi, did a complete turn around.
We met with Dr. Wiseman that day. Dr Wiseman took one look at Malachi and said: I think he has Hirshsprung’s. Looking at me searching for some flicker of acknowledgement, I just stood there like a deer in headlights. I had never heard of Hirshsprung’s, but after this kind, intelligent doctor explained to me that these kids (as he tends to say) usually do quite well, I felt like I had just won the lottery. I was ready to take the Hirshsprung’s diagnoses, and my baby, and high tail it out of there. Dr Wiseman tested out his theory by doing a dilatation, which from what I understood was simply stimulating the nerve endings. Hallelujah, someone heard my prayers and apologies for every rotten thing I had done in my teens (and my 20’s) because it worked, and my son would be ok.
Malachi only spent two days in ICU. Nice people, but he’d be perfectly happy to never see them again. Finally, we were able to take our son home. This becomes part two of Malachi’s story, living with Hirshsprung’s.
Before leaving Children’s Hospital, the wonderful Cindy had showed me how to do a bowel irrigation and dilatation on my newborn son. I had no idea, then, that this technique would become something so engrained in our daily lives and something that I would obsess over perfecting. I am convinced that you come to learn your child’s body and what works for them better then anyone else. Now dubbed “the poop fairy” by my then 7 year old, we became enslaved to this new ritual. Malachi proved not to be so simple. Two weeks after returning home we found ourselves right back where we started, at Children’s Hospital. This time, because Malachi was bleeding from his bowels. Turns out that Malachi is allergic to milk and it was this allergy that had caused his intestines to react so violently. It would be a long and trying 5 months to Malachi’s surgery date. In addition to milk, Malachi was also allergic to soy, and had spent more then a few nights in Children’s Hospital with bowel obstructions, and had eczema from head to toe. However, we fell in to our routine of bowel irrigations 4 times a day, dilatation’s in between and wet wrap therapy’s to treat the eczema. Like those who suffer from Stockholm syndrome, it became our thing; our way of life. It was our normal and, despite our challenges, we were quite happy.
I had made a list of things every mother who has a child with Hirshsprung’s should have. Good support, blue pads in bulk and a haphazard suit for the really nasty obstructions. The day finally came when Dr. Wiseman was going to take my son in to the operating room and change our lives as we knew it. I will never forget the moment when the nurse took my baby down the hall through the doors into the operating room. It was surreal. I felt as though I were floating above myself watching it all unfold. I cannot tell you how long Malachi was in surgery for but I know it was several hours. There were many other families who had come and left from the waiting room. I watched the phone and my heart jumped every time it rang to let the patients family know when their child was out of surgery but alas, the phone was never for us. Then when I was sure I could not take another minute of this torture, the door swung open and there he was. My son’s surgeon who looked as he always does confident and reassuring. I resisted the urge to pounce on him as he sat down across from us. Malachi’s surgery had gone as he suspected, the disease had effected only the lower segment of his colon and he had removed as much as they could.
All in all, Dr. Wiseman was pleased with how it went. Just then the phone rang and it was for me! One of us could go in to recovery and see Malachi, I remember looking at Malachi’s dad with whom he is the spitting image and it was quietly understood that it would be me. Truthfully I think Mark would have rather come between a grizzly and her cub then me and that recovery room. There laid my baby, groggy and out of it as he opened his eyes slightly and smiling. Malachi recovered from his ordeal in no time and we were again on our way.
With many children who have had this surgery the results vary and what we will soon learn is that Hirshsprung’s is not predictable. For ten months following surgery Malachi had no issue’s at all. There was no need for intervention and I had retired the dilator aka the magical poop wand. I was convinced we were one of those lucky families who would never have issue again post surgery. Well…….not so much. Just before Malachi’s second birthday I noticed a great deal of abdominal distention, then recognized the loopy looking intestines and the final clue vomiting when he tried to swallow anything. We rushed to Children’s hospital terrified and feeling utterly defeated. This was not to be the first or last time. I felt as though I had somehow personally failed. That ten months of no issue had made me over confident and I had mentally put it behind us. So here we were again. And again and again. For a period of 5 months for no rhyme or reason known to us we were struggling keeping the input and output regulated. Back to the old routine of bowel irrigations and dilatation’s. I should tell you…..not that easy with a two year old who has his own opinions on what you can do with that catheter. Having said all of this, I would not trade in a day for anything different.
This is Malachi’s journey and we have the privilege to go along. Should that change and we hit a bump in the road I know now that is all it is. A bump that we as a family will drive over and keep going. I hope that this blog reaches other families who have a family member living with Hirshsprung’s. I would love to connect and share our stories. After all, there are few other people who can laugh and see the humor and glory in being shit on. Literally!