Stories - Our Kids
“Failure to thrive” is not a diagnosis anyone wants for their baby, especially when nobody can figure out why.
Following a fairly routine pregnancy, Madalyn was born 2 weeks early, weighing 6 pounds 2 ounces. A small baby, but Mom Kayla and Dad David were advised not to be overly concerned.
“Doctors told us not to worry too much,” remembers Kayla. “After she was born Madalyn was losing weight and throwing up a lot so we stayed a few extra days. When we finally left the hospital she was down to 5 pounds 6 ounces. Everything else checked out fine, so we were able to go home and follow-up with a public health nurse.”
The nurse visited their home in La Broquerie the next day and discovered that Madalyn was still jaundice, still vomiting, and had lost more weight.
“I was a little bit worried,” says Kayla, “but they told us that everything was normal so we just continued on.”
“You try your best not to worry,” adds Kayla’s Mom Nicole, “but I remember looking at Madalyn in her crib and thinking ‘this is not normal – there is something wrong’.”
At 5 weeks, as Madalyn continued to struggle with vomiting and weight loss, the family made the decision to bring their tiny daughter to the hospital in Steinbach.
“They wanted to start an IV on Madalyn,” recalls Kayla, “but none of the nurses would touch her because she was too small. They just weren’t comfortable with it. And off we went to Children’s Hospital.”
Madalyn was admitted that day.
“They admitted us right off the hop,” says Kayla. “Madalyn was going into kidney failure; she was going into liver failure. She was just so small and dehydrated and sick. But we didn’t know why.”
The initial suspicion was pyloric stenosis, a condition that affects the opening between the stomach and small intestine in infants.
“The first ultrasound seemed normal, but they wanted to do another one a couple of days later,” remembers Kayla. “In the meantime we saw everybody. We saw genetic specialists, neurologists, cardiologists, dietitians, and a gastro intestinal (GI) specialist. There are specialties I didn’t even know existed, and I think that’s what helped me get through such a terrible time. Everyone was so focused on helping Madalyn.”
After 10 days Madalyn was placed on a pre-digested baby formula, gained a little bit of weight and was sent home with a follow-up from her pediatrician scheduled for a week later.
“At this point we still didn’t have a diagnosis,” says Kayla. “Pyloric stenosis was ruled out, she was gaining weight and the hope was that Madalyn would continue to improve at home.”
The following week Madalyn had her first meeting with pediatrician Dr. Al-Somali at Children’s Clinic and he immediately knew that something significant was going on.
“He told us to pack our bags and come back the next morning,” says Kayla, “because we were being re-admitted.”
It was a busy time with x rays, ultrasounds, barium swallows and countless tests. 7 week old Madalyn was still jaundice and vomiting so the doctors decided to start fresh.
“They took her off all food for 3 days,” says Kayla. “They had her on IV fluids to try and see what she would tolerate. They just couldn’t figure her out.”
The biggest clue came when a medical student watched Kayla cleaning up after Madalyn. It was the colour of her vomit that intrigued him.
“The student asked me if he could take the cloth I was using,” remembers Kayla. “He seemed so excited about it. Eventually he came back and said ‘your baby is throwing up bile and blood – she’s allergic to something’. Now we just had to figure out what.”
Madalyn was put on a specialized hyper allergenic formula and the tiny little girl was slowly tube fed. Things began to change almost instantly.
“Finally she relaxed,” says Kayla. “Within the first 2 bottles she actually stretched out, and it was the first time we’d ever seen her full length.”
At this point their GI specialist Dr. Griffin got more involved, and the timing was perfect.
“It is my understanding that Children’s Hospital hasn’t had an in-house GI specialist all that long,” says Kayla. “I believe she started at the end of 2012, and this was early 2013. It’s kind of amazing that this new specialty just came in, because she ultimately diagnosed Madalyn.”
When Madalyn was 3 ½ months she had gained enough weight to undergo throat, stomach and intestinal biopsies to rule out some possibilities. The diagnosis finally came. Madalyn has a severe animal milk protein allergy.
“At that time Dr. Al-Somali told us there were only 5 kids in Canada with that diagnosis,” says Nicole.
“It has to do with milk,” explains Kayla. “She can’t have dairy or soy. For the longest time Madalyn didn’t even register on the growth chart. At 3 months old she wore newborn clothes. Once we got the diagnosis everything started to improve. She finally hit on the growth chart when she was 9 months. Even though she was in the 10th percentile, it was still really exciting.”
Determining the diagnosis meant that Madalyn could finally thrive and quickly make up for lost time.
“By 18 months we were hitting the 90th percentiles and Madalyn had caught up from her difficult start,” says Kayla. “She’s pretty much hit all of her milestones on time and is a normal kid, except for what she can eat.”
Madalyn will have annual checkups that include a re-introduction to the allergen to see if it’s gone away. If Madalyn still has the allergy at age 3 it is likely to be with her forever.
“She’s the kid that’s never been to Mc Donald’s,” says Kayla. “At the beginning I wasn’t sure what I was going to feed her, but I’ve gotten a bit creative in the kitchen and it just seems normal now. I don’t want Madalyn to feel different or left out. I want her to have the same lunches and snacks as everyone else.”
Everything has to be made from scratch, even her bread,” says Nicole. You can’t buy bread without soy in it.”
Watching their energetic 2 year old run around, the family can’t help but reflect on the journey.
“We would have lost her without Children’s Hospital,” says Kayla. “They always seem to have the answers for you, and if they don’t they will find the answers. Even though Madalyn’s diagnosis took a while, I know how hard everyone was looking. I never felt like we weren’t important.”
“We are hoping that with Madalyn’s story it might not take so long for other kids to get diagnosed because we almost lost her,” says Nicole. “Her liver and kidneys were shutting down all because of this allergy.”
Each return visit reminds Kayla of her gratitude.
“Children’s Hospital has been really great at providing us with resources, such as the dietitian that we still see regularly. I cannot thank the doctors and the students enough,” says Kayla. “The students were so devoted to Madalyn. The nurses made us feel so comfortable and taught us everything we needed to know. They never let us go home until we felt perfectly comfortable. When I come here now it feels like my safe place.”
With your donation, you can help more Madalyn’s get the answers they need. Donations to the Children’s Hospital Foundation have helped fund the Children’s Allergy & Asthma Education Centre (CAAEC), providing lifesaving education for kids like Madalyn.
With your donation, you can help more kids like Madalyn get the answers they need.