Jacob and Kayla were twelve weeks pregnant when they went in for their prenatal genetic screening. “We were very excited to get into things like paint colors for our daughter,” says Jacob. “And then we found out from the test that there was a possible abnormality in the left side of our daughter’s heart.”

At twenty-two weeks it was confirmed: their daughter had Hypoplastic Left Heart Syndrome. Jacob and Kayla started to think about logistics: how would the insurance work, what would they do about childcare, did they need to move to make sure that their daughter got the care she needed? After doing some research, they felt fortunate that a hospital in their home state of Iowa, only 40 minutes from their home, had a great reputation. Being first time parents, their daughter’s health challenge was obviously a huge stressor on top of all of the “normal” new things they’d have to go through along the way.

After Mila was born, she had some complications and their initial hospital stay was increased, to 96 days. During that time Jacob and Kayla discovered that the pediatric intensive care unit (PICU) had a huge learning curve; it took them a while to become comfortable with the jargon and then become confident saying yes and no to things. As they started to look into the procedure Kayla would need, Hybrid Comprehensive Stage 2, they were discouraged at the high mortality rates but found that somehow, the rates at Nationwide Children’s Hospital were different. They discovered that many of the publications about this procedure were being published by Dr. Mark Galantowicz, Chief of Cardiothoracic Surgery and Co-Director of the Heart Center at Nationwide Children’s.

Most hospitals use the Norwood procedure as a first choice for HLHS patients with the Comprehensive Stage 2 procedure as a backup plan. Nationwide Children’s, however, is exactly the opposite. Jacob learned that it takes doing a procedure about 10-12 times for a surgical team to become competent in it across the board. Because Dr. Galantowicz and his team have done the Comprehensive Stage 2 procedure almost 200 times, it was important for Jacob and Kayla to get Mila transferred to Nationwide Children’s. The team at their hospital in Iowa was extremely supportive in helping them with the transfer request and wrote a referral. The first transfer request was denied by the insurance company very quickly, the peer-to-peer review coming back in less than 45 minutes. And then there was a second rejection. Jacob says, “From a parental standpoint it doesn’t sit well when you have a huge decision to make and along the way you respect all the rules and do all the legwork and then you don’t get to advocate for your own child.”

They requested the transfer a third time, following insurance guidelines to appeal and crafted a letter detailing the case history and why they found it medically necessary to transfer to a hospital that has proven, positive results. “It was important for us to pick up the fight on behalf of our daughter and present our rationale for making sure she was put into the situation that was best for her,” says Jacob. “We were ecstatic when our insurance company approved!”

There was no time to waste: the approval came on a Thursday and Mila was in surgery at Nationwide Children’s early the following week. Jacob says, “I felt like a huge weight had been lifted and the anxiety almost disappeared. She was still going into surgery and we were worried, but I knew she was at the right place.”

He continues, “Dr. G is gem. His bedside manner is spectacular. It was a matching of a really good personality and talent but also a mass amount of hope. He was disappointed that our first transfer request was denied and that speaks a lot about how much he cares for his kids. It’s because of Dr. G’s experience and expertise, along with the hospital itself and the long-term care plan, that we came to Columbus; all of these things mattered greatly to us. This was not a cosmetic surgery for Mila; it was a surgery that would literally allow her to survive. We felt like the best place for her would be at Nationwide Children’s.” Jacob and Kayla hope that their family’s story will result in more families having the chance to be treated at Nationwide Children’s Hospital.

They say that laughter is the best medicine, but little Mila didn’t giggle on the same timeline as the average baby. Her dad says that when, after a couple of months, she finally laughed for the very first time they were completely relieved. Her laugh told them that everything was going to be okay.

https://flutter.nationwidechildrens.org/wp-content/uploads/2020/05/Mila.jpeg

https://flutter.nationwidechildrens.org/wp-content/uploads/2020/05/050420BS0117G.jpg

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• Name: Mila J.Mila Johnson
• Condition(s): Hypoplastic Left Heart Syndrome
• Age at Treatment: 6 months
• Age Today: 10/22/20194 Years

Jacob and Kayla were twelve weeks pregnant when they went in for their prenatal genetic screening. “We were very excited to get into things like paint colors for our daughter,” says Jacob. “And then we found out from the test that there was a possible abnormality in the left side of our daughter’s heart.”

At twenty-two weeks it was confirmed: their daughter had Hypoplastic Left Heart Syndrome. Jacob and Kayla started to think about logistics: how would the insurance work, what would they do about childcare, did they need to move to make sure that their daughter got the care she needed? After doing some research, they felt fortunate that a hospital in their home state of Iowa, only 40 minutes from their home, had a great reputation. Being first time parents, their daughter’s health challenge was obviously a huge stressor on top of all of the “normal” new things they’d have to go through along the way.

After Mila was born, she had some complications and their initial hospital stay was increased, to 96 days. During that time Jacob and Kayla discovered that the pediatric intensive care unit (PICU) had a huge learning curve; it took them a while to become comfortable with the jargon and then become confident saying yes and no to things. As they started to look into the procedure Kayla would need, Hybrid Comprehensive Stage 2, they were discouraged at the high mortality rates but found that somehow, the rates at Nationwide Children’s Hospital were different. They discovered that many of the publications about this procedure were being published by Dr. Mark Galantowicz, Chief of Cardiothoracic Surgery and Co-Director of the Heart Center at Nationwide Children’s.

Most hospitals use the Norwood procedure as a first choice for HLHS patients with the Comprehensive Stage 2 procedure as a backup plan. Nationwide Children’s, however, is exactly the opposite. Jacob learned that it takes doing a procedure about 10-12 times for a surgical team to become competent in it across the board. Because Dr. Galantowicz and his team have done the Comprehensive Stage 2 procedure almost 200 times, it was important for Jacob and Kayla to get Mila transferred to Nationwide Children’s. The team at their hospital in Iowa was extremely supportive in helping them with the transfer request and wrote a referral. The first transfer request was denied by the insurance company very quickly, the peer-to-peer review coming back in less than 45 minutes. And then there was a second rejection. Jacob says, “From a parental standpoint it doesn’t sit well when you have a huge decision to make and along the way you respect all the rules and do all the legwork and then you don’t get to advocate for your own child.”

They requested the transfer a third time, following insurance guidelines to appeal and crafted a letter detailing the case history and why they found it medically necessary to transfer to a hospital that has proven, positive results. “It was important for us to pick up the fight on behalf of our daughter and present our rationale for making sure she was put into the situation that was best for her,” says Jacob. “We were ecstatic when our insurance company approved!”

There was no time to waste: the approval came on a Thursday and Mila was in surgery at Nationwide Children’s early the following week. Jacob says, “I felt like a huge weight had been lifted and the anxiety almost disappeared. She was still going into surgery and we were worried, but I knew she was at the right place.”

He continues, “Dr. G is gem. His bedside manner is spectacular. It was a matching of a really good personality and talent but also a mass amount of hope. He was disappointed that our first transfer request was denied and that speaks a lot about how much he cares for his kids. It’s because of Dr. G’s experience and expertise, along with the hospital itself and the long-term care plan, that we came to Columbus; all of these things mattered greatly to us. This was not a cosmetic surgery for Mila; it was a surgery that would literally allow her to survive. We felt like the best place for her would be at Nationwide Children’s.” Jacob and Kayla hope that their family’s story will result in more families having the chance to be treated at Nationwide Children’s Hospital.

They say that laughter is the best medicine, but little Mila didn’t giggle on the same timeline as the average baby. Her dad says that when, after a couple of months, she finally laughed for the very first time they were completely relieved. Her laugh told them that everything was going to be okay.