Boy’s heart defect, cleft lip and palate found in utero

High-risk pregnancy team guides family through delivery and baby’s surgeries

Boy’s heart defect, cleft lip and palate found in utero

Curling up with a good book is how 8-year-old Canaan Backstrom prefers to spend a day off school.

“I’m reading all day. ‘Wings of Fire,’” Canaan said mentioning the series he’s currently engrossed in. “When you get into a book, you know very interesting, you just want to read.”

Mom Kaitlyn adds, “he loves reading. He finished the whole Harry Potter series by age 7-1/2. Yeah, read the whole Harry Potter series.”

Growing to be a smart, active boy, Canaan was born with several dramatic health issues.

All were discovered around Kaitlyn’s 20-week pregnancy screenings at Sanford Health in Sioux Falls, South Dakota.

“I remember I went to work that day. I still have the picture, the Snapchat of me snapping my husband. It said on the bottom, ‘let’s go find out what we’re having!’” Kaitlyn said.

‘Blindsided at that point’

The ultrasound revealed the piano teacher’s first child and son but also much more.

“That’s when the doctor told us that he had a cleft lip and palate. Which at that point, devastating news. You think about the surgeries your baby is going to need. The feeding difficulties they’re going to have. Blindsided at that point,” Kaitlyn said.

“Five days later we went to high risk to see Dr. Mac. In that appointment they found his heart defect.”

An amniocentesis would also show Canaan had an ultra-rare genetic disorder called 22q duplication syndrome.

“Aside from the actual heart surgery, that’s probably the most I cried ever in my life,” Kaitlyn said.

After a lot of tears, the Sanford team and Michael McNamara, D.O., a high-risk OB/GYN, consoled Kaitlyn and husband Caleb. Then, they immediately helped the family craft a care plan.

“By discovering it in utero during the pregnancy, we’re able to make the plans,” Dr. McNamara said. “So they have no uncertainty once the baby is born or at least as little uncertainty as possible.”

Roughly 1% of babies have a congenital heart defect and just 25% of them need surgery or other treatment right away.

“I think the support system is very good here (at Sanford Health) that way. Our pediatric subspecialists and specialists, they work to be sure that parents have that type of insight prior to when the baby is born,” Dr. McNamara said.

‘That’s what the parents deserve’

Six days after being born, Canaan underwent successful heart surgery.

During his first year of life, he had three surgeries for cleft lip and palate.

The level of trust between Kaitlyn and Dr. McNamara is hard to measure.

“Oh man, he’s so great. We just love him so much,” Kaitlyn said. “My next two pregnancies we were living in Grand Forks, North Dakota, at the time. I was like, 20-week appointment, I need it with Dr. Mac. We drove down here for each of those appointments.

“I knew Dr. Mac knew exactly what to look for. I just trusted him a lot. He’s been wonderful. We love him.”

Now the oldest of three boys, Canaan, an advanced second grader who also loves football, is thriving.

“That’s what you want and that’s what the parents deserve,” Dr. McNamara said. “He doesn’t know any different. He had surgery. He has a scar on his chest but that’s secondary. He’s just a normal active child and probably no different than his two younger siblings, and they probably don’t cut him any slack whatsoever.”

Kaitlyn adds Canaan “loves the Vikings. Someday, our dream is to get him to a game. It’s probably better than Disney World to him.

“Future-wise, high school, he will probably just need to go to the cath lab and get a stent placed in his heart. We can do that here in Sioux Falls. That’s really nice.”

That’s because Canaan’s cardiologist is also just down the road at Sanford Health.

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Posted In Children's, Heart, Pregnancy, Sioux Falls, Women's