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May 23, 2014 10:15 PM

Healing Help

Beresford, SD

The Beresford community is rallying around a baby boy who has spent several months in the hospital. It's taken many specialists and hundreds of miles of travel, but Ben Carlson is finally home with his family.

"To meet Ben is to fall in love," Mother Angela Carlson said.

He may be tiny, but Ben Carlson always makes a big impression.

"He's a lover, a complete lover. You look at him and your heart melts. He's an amazing little boy," Father Chris Carlson said.

Just looking at him, you can see his little heart is filled with love. What you don't see is that it isn't very strong.

Doctors first noticed something was wrong with Ben when has mom Angela was just 12 weeks pregnant.

"Ben, while still inside, was diagnosed with trisomy 21, which is down syndrome and that can be associated with heart disease, almost 50 percent of kids will have heart disease," Dr. Nofil Arain said.

A couple months after Ben was born, he went into heart failure and had to be flown to Ann Arbor Michigan.
The family only expected to be there for a couple weeks. It turned out Ben was there for two months.

"It's just hard being away with your baby and he ended up having two open heart surgeries placed at that point, and a pacemaker at that point, so scary time, very scary," Angela said. 

Even after those surgeries, the road didn't get any easier for Ben.
He couldn't swallow his food and wasn't getting nutrition, so doctors had to put in a nasal gastric tube.

"With that we can give him the nutrition he needs without him actually having to bottle to take all of it, because with his heart disease he would tire out before he could get all of the formula in that he needed to maintain his nutrition to continue to grow and develop," Dr. Brock Doubledee said.

Ben's case is unique and complex.  With multiple issues, he needs to see multiple specialists at Sanford Children's Hospital.

"It's kind of nice to have everybody around you. You can get anybody's input, consults are very easy to do," Arain said.

"We have such a wide variety of sub-specialists here. There's essentially no pediatrics subspecialty that you can't get at Sanford's Children Hospital," Brock Doubledee said.

Even with so much help in their home state, it's been a long road for the Carlson family.  Ben's journey has taken them to hospitals across state lines.  Children's Miracle Network has been there every step of the way.  CMN helped with expenses while Ben was in Ann Arbor, allowing the family to focus on his recovery so he could return home where his big brothers were waiting.

"We didn't plan on being gone as long as we were so that was nice they were able to help with that," Angela said.

While the Carlson’s never expected to need help from CMN, they'll forever be thankful for everything Children's Miracle Network has done for their sweet baby boy.

"Until you're in that situation I don't think a lot of people spend time thinking about it but a lot of people should, because when you are in that situation, it's a gift, they're a gift," Chris said.

"Nobody ever wants to be in a situation where they need to rely on something like that and quite frankly before Ben it wasn't something I ever thought of. I'm getting goose bumps right now just because it's an amazing, amazing thing," Angela said.

Though Ben isn't done fighting yet, the Carlson family is happy to be home.

And no matter where the road takes them, they're confident their little boy will be surrounded by the love of his family and support from Children's Miracle Network.

Sanford Children's Hospital recently added more than a dozen new specialists.  The highly trained doctors will allow more young patients to be treated in South Dakota.

It will also be beneficial for children with complex cases, including Ben.

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