For some families, relocating is worth better access to health care

Generally, access to health care — a pediatrician, dentist or hospital for those rare emergencies — is about quality of life.

For some, though, it's a matter of life or death.

That's why Joy and Bruce Salls moved to Mount Vernon from Vermont.

In Vermont, it took an hour or more to get from the Salls' home to the hospital.

'If I had to call Bruce at work, it was two hours before he was there,' Joy Salls says. 'It's quite a long time if your kid stops breathing.'

Their daughter Corinne 'Cora' Salls was born with Trisomy 18. The condition — a result of an error in cell division — can result in life-threatening medical complications such as heart, kidney and intestinal defects, fluid on the brain, delayed growth, severe developmental delays and more.

Traveling miles, hours or even across continents to seek treatment at a hospital — like the University of Iowa Children's Hospital — that offers sub-specialized care isn't unusual. For some families, like the Salls, moving is worth the cost of uprooting their family to be closer to doctors at the drop of dime.

At 18 months, Cora has already undergone heart surgery to repair two holes in her heart as well as intestinal surgery. She still looks and acts like an infant. She can't speak, crawl or hold her head up. Her immune system is very weak and susceptible to catching a cold, which could put her back in the hospital in a heartbeat.

So they moved from rural Vermont to Mount Vernon, which is less than an hour away from University of Iowa.

'It's a pretty devastating diagnosis,' said Joy Salls, Cora's mother. 'If you Google Trisomy 18, one of the first things that comes up is the terminology 'incompatible with life.''

According to the Trisomy 18 Foundation, 50 percent of Trisomy 18 babies are stillborn. If they do survive birth, less than 10 percent make it to their first birthday. Past one year, they have a significantly better chance of survival, but very rarely live past their 20s or 30s.

'I've heard some horror stories about doctors pressuring families to terminate (their pregnancy),' Joy said.

Though she's never personally encountered what she calls 'lethal language,' they have been told that Cora will live 'a difficult life.'

'No parent wants to hear that, but (the doctors) didn't say she's going to die or she's not going to make it,' she said, which is partially why she believes her 'miracle baby' has defied all the odds — battling her way through a year and a half, going on two.

Scott Turner, Executive Director of the University of Iowa Children's Hospital said that although it's pretty rare for families to want to uproot, it's not uncommon for parents struggling to find answers to complex conditions to want to be closer to a hospital that offers sub-specialization like theirs. Fifty-four percent of the hospital's patients travel more than 30 miles for care there.

'When they find a children's hospital — like University of Iowa, where we've got every specialist under one location — maybe they stumble upon an answer that's been pretty difficult to come by,' he said. 'It can be a breath of fresh air. People understandably want to be closer to that ... and the ability to facilitate and coordinate care at one location is a huge relief.'

That's how the Hosp family felt.

Their adopted son, Daniel, was born with facioscapulohumeral muscular dystrophy (FSHD), a progressively degenerative muscle disorder that primarily affects the muscles of face, shoulder blades and upper arms. It's fairly common in adults, but far more rare at birth. Infantile-onsite FSHD usually progresses much more quickly than adult-onset.

The Hosp family moved to Iowa City from Florida — where they had to drive two to three hours to reach the specialists they were looking for — because ' they had no idea what his progression was going to look like,' says Daniel's dad John Hosp. 'We figured being right here was priceless. Having that peace of mind, that if things did progress quickly, we're right here.'.

In Tallahassee, doctor's weren't familiar with the disease.

'There were just so many doctors that were involved and nobody knew about it. It was just really hard to try to piece it together,' says Daniel's mother Michelle Hosp. 'So when we came to the clinic here and everybody worked together and everybody knew about it, it was like 'oh my gosh, this is what good health care is.''

In Iowa City, Dr. Katherine Matthews — one of the country's few specialists in pediatric neurology and particularly neuromuscular disorders — is just a few blocks away.

'She's amazing,' Michelle Hosp says. 'Not only does she know so much about this particular muscular dystrophy, she also does an amazing job of informing other doctors that may be working with him.'

While picking up and moving is challenging, it was worth it, the Hosps say.

'When you're dealing with a health issue that you don't know what the prognosis is going to be in the big picture ... knowing that you're going to have the right health care, I cannot express enough what a difference that makes for our family,' Michelle Hosp says. 'Just being able to sleep at night, knowing there are people you can ask questions and you are going to get answers ... having those doctors is a huge peace of mind.'