When Liz Crawford gave birth to her son Malachi in November of 2008 it quickly became apparent that something was wrong.
“24 hours after he was born he hadn’t had a bowel movement, he wasn’t eating, he really wasn’t even awake,” remembers Liz. “Malachi started to throw up when we tried to feed him. Within 48 hours he was moved into ICU (Intensive Care Unit).”
As hard as it is to have a sick baby, it’s even harder to endure without knowing what exactly is wrong.
“When he was in ICU I was afraid of leaving so I never did,” says Liz. “I slept in the chair beside the bed, and was adamant that he be held 24/7.”
Malachi continued to decline and doctors believed it may be due to something metabolic. When that was ruled out, in about 10 days, they found themselves at a bit of a standstill.
“The pediatric surgeon Dr. Wiseman is pretty much my hero,” says Liz. “He literally walked up to Malachi, took a long look and said; ‘that’s Hirschsprung’s Disease’. He nailed it before even doing a biopsy.”
Having had time to consider many more dire outcomes, this diagnosis was a welcome one.
“At this point we are a month in and I have been told to prepare for the fact that I may never take my son home,” remembers Liz. “So when I got that diagnosis and Dr. Wiseman told me that Malachi would indeed come home, and live a full life, that was good enough for me. When other families tell the story of getting the diagnosis of Hirschsprung’s it’s terrifying, but when I got the diagnosis I felt like I had won the lottery, because I knew my son was going to come home.”
Hirschsprung’s Disease is a rare gastrointestinal disorder that impedes the colon’s ability to function. It primarily affects boys, and occurs 1 in every 5,000 births. Patients typically have mild to extreme bowel management issues for anywhere from 2 years up to 15 years old. Malachi had surgery at 6 months, and is a candidate for another procedure in the future.
As relieved as Liz was to bring her baby boy home, the first 3 years of Malachi’s life included 20 trips to Children’s Hospital.
“We had quite a bumpy road,” remembers Liz. “Malachi had lots of complications; numerous bowel obstructions, complications with a variety of allergies. We spent a great deal of time at Children’s.”
When they did get to go home, the extraordinary care and resources of Children’s Hospital continued to provide guidance and reassurance.
“Our nurse practitioner, Cindy Holland, has been an absolute godsend,” says Liz. “She is truly amazing. I could text her any time and she always responded. The entire pediatric team at Children’s Hospital are amazing. They put patients first in a way I have never experienced before, it’s quite something.”
After homeschooling until he was 6, Malachi now goes to school. His bowels are managed daily at home, but the long-term prognosis is still a bit of a mystery.
“Hirschsprung’s Disease is like a moving target,” explains Liz. “For the most part as kids get older they are able to manage it better. The crisis period seems to be between birth and 4 years old, but the fact is you just don’t know, and they can go downhill very quickly.”
“They literally saved my son’s life,” says Liz. “I know that for a fact. I have developed such a relationship with the pediatric surgeons through this journey, and they have been nothing short of amazing. Anything they didn’t know they made an incredible effort to learn. Every case of Hirschsprung’s is different and they helped me through some really difficult days.”
Some of those difficult days revolved around Malachi’s feelings of anxiety while at the hospital. It was managed in a way that beautifully showcases what makes Children’s Hospital so extraordinary.
“When Malachi was 2 he spent pretty much an entire year being Spiderman,” chuckles Liz. “So we would go to clinic to see Dr. Wiseman and Malachi would refuse to take off his Spiderman costume. Dr. Wiseman has such a special relationship with him that he agreed to call him Peter Parker, if he would just take off his costume. Malachi quickly agreed to do it. It was simply wonderful.”
That’s just one of many reasons Liz is grateful to Children’s Hospital.
“Children’s Hospital is a big, on-going part of my life,” says Liz. “The way the entire staff is with kids, and how they understand their fears and anxieties makes things so much easier.”
Liz has gone on to make things easier for other families dealing with the same diagnosis by setting up a social media campaign in 2012.
“When our journey began it was difficult to find out information about Hirschsprung’s Disease,” recalls Liz. “So I set up the ‘Hirschsprung’s Community’ Facebook page as a family support group to share stories and information. The Sh*t Happens campaign was a viral way to take action and drive awareness so families could find the Facebook Page. I created this T-shirt campaign and got friends and celebrities to wear the Sh*t Happens T-shirt which proved very successful and has evolved into many other things.”
“We call Malachi our ‘Director of Inspiration’, and make sure he knows the impact his journey has had in helping kids all over the world with Hirschsprung’s Disease’” says Liz. “It all started here at Children’s Hospital.”
Because of your generous support of the Children’s Hospital Foundation of Manitoba, research is being done at the Foundation owned and operated Children’s Hospital Research Institute to understand Hirschsprung’s Disease as well as the impact.
Looking back on her journey, Liz not only sees the challenges in her past, but also the gifts.
“In some ways, this experience has given me tremendous confidence,” says Liz. “My son taught me to be a warrior, and it has had a huge impact on how I see things. All I’ve ever wanted for Malachi is to have a normal life. I want him to be confident and not held back by anything.”
Please give generously so that more kids like Malachi can continue to thrive.
For more information on Hirschsprung’s Disease please see www.reachhd.org