As Shandi Chuhie gave birth to her baby boy Dawson on March 3rd, 2014, there was no reason to anticipate any complications. Born 6 lbs 4 ounces and 19.5 inches long, all went smoothly. The only concern was that Dawson had to stay at the hospital an extra day because he wasn’t putting on weight. Like many babies, Dawson was born with a heart murmur – but it was expected to disappear in a few days.
A couple of weeks later Mom noticed that Dawson was sleeping an awful lot, 22 hours a day, but nothing seemed terribly wrong. A visit to the family doctor confirmed that everything seemed fine, but maybe a quick check at Children’s Hospital would be a good idea.
“I had this gut instinct that something wasn’t right,” remembers Shandi. “Compared to other babies he looked really small and he wasn’t gaining any weight. So I went to Children’s Emergency that night.”
An examination revealed that Dawson’s heart murmur was still there, which was surprising for a 2 week old. An x-ray discovered that Dawson’s heart and liver were enlarged, and a cardiologist was brought into the mix.
“I realized right then that this was not a good situation, but I was still trying to downplay it in my head as much as possible,” remembers Shandi. “Maybe the cardiologist would determine it was something simple.”
An ultrasound provided some answers, but the doctors wanted a consult before coming to any conclusions.
“The cardiologist said ‘I think I know what I see, but I don’t want to say anything until I contact another cardiologist and make sure it is what I think it is,’” recalls Shandi. “And when they tell you that, it’s never a good thing.”
Dawson had a couple of conditions that were keeping him from thriving. One was AP window, which is a hole between the two main arteries in the heart. According to Shandi, 1 in 100 babies will be born with a congenital heart defect, and 1 in 100,000 of those babies will have AP window. It’s extremely rare.
Little Dawson also had a PFO, which is a small hole in the heart, that generally closes after birth. He also had a leaky mitral valve, which thankfully repaired itself.
What Shandi thought was a quick check up at Children’s Hospital suddenly became a great deal more;
“Before the doctor left for the night he said; ‘I’m sorry you can’t leave the hospital, you need to stay here. And if everything is what it seems, you’ll be flying to Edmonton for heart surgery’. My whole life just kind of stopped for a moment,” remembers Shandi. “At the time you really don’t process it, but then you sit back and it hits you.”
Dawson was admitted to Children’s Hospital for monitoring. Dietitians put him on a high calorie diet, cardiologists provided daily check-ups and best of all, someone else took care of all of the details regarding Dawson’s impending heart surgery.
“Luckily The Heart Centre has an amazing social worker who does all the planning for you,” says Shandi. “They tell you to just keep your baby healthy, get on that plane, and we have everything else covered.”
The 2 weeks between diagnosis and the flight to Edmonton, provided some challenges for the young Mom.
“I was googling everything, and the more you google the worse it gets,” remembers Shandi. “I learned I had to just stop doing that, and only listen to what I was actually told. They prepare you very well, but it’s a lot to take in.”
Shandi and her Mom Juanita made the trip to Edmonton for Dawson’s lifesaving surgery.
“There are so many emotions,” explains Shandi. “You’re worried, but it’s a happy kind of worried because it’s going to get fixed.”
Before the surgery could happen, little 7 pound Dawson required a lot of pre-op, including getting an IV and sedation.
“They had to take blood from his skull, because his veins were so dropped in from not eating much,” recalls Shandi. “That was horrible. I couldn’t watch. I was holding his hand, but I had to look away or I would have fainted. Dawson handled it all just fine.”
Even with all she was going through, Shandi took pleasure in an opportunity to help others;
“There was one positive. They had to remove a gland on top of the breastbone, which babies have, that dissolves as you age,” explains Shandi. “But since they were taking it out, they asked us to donate it, and they use it to make pills for kids in cancer treatment. So in the midst of all this heartache, it was nice that Dawson was able to help other kids in the process.”
Dawson’s surgery lasted for 3 hours. A span Shandi describes as “the longest 3 hours ever.”
Coming out of surgery you could barely see little Dawson amidst all of the lines and machines.
“I walked in and never expected what I saw,” remembers Shandi. “He had an IV sewn into his neck with 5 different cords coming off of it. He had IV’s in both of his hands, a catheter, a breathing tube, a feeding tube, a chest tube and massive bandages across his chest.”
Shandi sat with him for the next 12 hours, jumping at every alarm and waiting for the time to pass.
“I just sat there and held his hand, because you’re not allowed to hold him at first,” recalls Shandi. “It was horrible not being able to hold him because I needed him to know I was there. I felt so helpless because there’s not much I could do to comfort him.”
5 days after surgery, Shandi and Dawson received some amazing news; the surgery was successful, and they could go home.
“I was doing my happy dance,” says Shandi. “It’s hard to be away from home. You just want to get your baby back to where things are comfortable.”
Returning home would require many follow-ups to make sure everything was healing properly.
In June Shandi noticed that Dawson had difficulty swallowing, which immediately made Mom fear that something had gone wrong with his heart.
“I was almost heart broken,” remembers Shandi. “I was like, what else could I possibly have to go through, we’ve been through enough.”
A check at Children’s Hospital led to a diagnosis of laryngomalacia – excess skin from around the voice box and the windpipe. It was ultimately determined that all of the tubes required for heart surgery may have weakened Dawson’s throat, which was rendered not strong enough for growth, and resulted in the floppy blockage.
In October, after monitoring the condition for a few months, doctors determined it wasn’t going to go away on its own and Dawson was scheduled for a supraglottoplasty, to remove the skin.
The laser surgery at Children’s Hospital was mild by comparison, and Shandi took the one night stay in stride.
“The second surgery was like no big deal,” says Shandi. “Even the doctor said, compared to heart surgery, this is easy.”
Shandi is looking forward to a bright future with her thriving little guy, and just a few additional challenges thrown in.
“Dawson still has a mild left pulmonary stenosis, a narrowing of the left artery to his lungs, which is a side effect of heart surgery,” says Shandi. “Since it’s mild it shouldn’t be a problem. Dawson has asymmetrical brain waves, but his brain MRI came back fine, so we’re still trying to figure that one out.”
At not even one year of age, Dawson and Shandi have experienced a lot at Children’s hospital.
“We’ve been on the regular ward, PICU, Emergency, respirology, urology, seen dietitians, social workers, nurses, doctors, specialists and more,” lists Shandi. “The end result is that Dawson should go on to live a normal, healthy life. But if it wasn’t for Children’s hospital, who knows what could have happened? If it wasn’t for that one doctor ordering that one x-ray, it could have been terribly different. If it wasn’t for the Children’s Hospital, Dawson, most likely, wouldn’t be here.”
It was a long process, but November marked Dawson’s last day of meds, and as he approaches his first birthday, he is a healthy little boy.
“I went from thinking my baby had a cold, to having open-heart surgery 3 weeks later,” says Shandi. “I rely on Children’s Hospital for everything. They’re kind of like our extended family. The staff is amazing, and could not have done more for us. We felt like Dawson was the only thing that mattered. There are no words to describe how much they gave to me. They gave me my son.”