By Liana Jacob
THIS SMILEY BOY was diagnosed with a condition that meant he had to have a SPINAL SURGERY when he was just EIGHT HOURS OLD and despite strangers feeling SORRY for them, his parents couldn’t be prouder of their miracle baby.
Stay at home mum, Shaylise Harris (26) from Utah, USA, and her husband, Alex (28), had tried for a baby for two years and had undergone numerous fertility tests before Shaylise found out that her hormone levels were way off.
Three months into taking a hormone drug, Letrozole, they found out they were pregnant and they were thrilled at the news. They had already started buying baby clothes before they had taken a pregnancy test as they were so excited to start a family.
But on her 20-week pregnancy scan, their technician told them they were having a baby boy and went very quiet. After they left and began shopping for their baby boy, Shaylise got a call from the doctor who said that their pregnancy scan didn’t look right; he had problems with his brain, spine and feet. A few days later it was confirmed that their son had myelomeningocele spina bifida, a birth defect in which the backbone and spinal canal do not close before birth.
Despite being offered an abortion by their doctor and not knowing the severity of his condition, baby Leo (2), was born in November 2017.
At just eight hours old, Leo had to have a spinal surgery that lasted four and a half hours. He also had an external ventricular drain (EVD) to alleviate pressure off his back-closure stitches when he was just 10 days old. He wore a pelvic harness from the age of one month to six months and he has been using a wheelchair to move around.
There have been strangers who have said that they were sorry that he has spina bifida, but Shaylise and Alex want to prove to the world that Leo his condition doesn’t stop him from living his life.
“Alex and I have been married for six years. After we had been married for a couple years, we felt the time was right to start our family,” Shaylise said.
“It took us longer than we planned. We ended up going through all of the fertility tests which were emotionally exhausting. Ultimately, we found out that my hormone levels were way off.
“I went on a prescription of letrozole. It only took three months of being on that prescription to get pregnant. We were thrilled when we finally got the positive pregnancy test.
“We had already started buying baby gear before the positive test so you could say we were eager to be parents.
“Leo was diagnosed with spina bifida at twenty weeks gestation. The early diagnosis was good for us in so many ways.
“We were able to prepare and experience our emotions so that by the time he was born, we were just excited about our new baby.
“Of course, we were still worried about his surgery, but we had already been through all of the hard worries and strong emotions through the pregnancy.
“The day we got the diagnosis was full of a lot of fear and worry and conversely, the day Leo was born was full of so much hope and joy. He was born happy.
“His first smile was when he was an hour old; he seemed to want to tell us that everything would be okay and that his surgery would be okay.
“We had so much love for our happy boy. We also had concern for his upcoming surgery and knew that already at just minutes old he had an uphill battle to face.
“Leo’s spinal surgery was about four and a half hours. They didn’t call us until he had been in recovery for about an hour.”
Shaylise says that his positive attitude to life makes her proud of him and to call him her son and that no condition would ever put him down.
Reading and talking to other families who had kids with spina bifida has helped them through their own journey.
“After getting Leo’s diagnosis, the thing that helped us most was talking to other families who had kids with spina bifida,” she said.
“We decided that we wanted to share our experience so that others who were getting a new diagnosis could see what it was like.
“We also have a really great support system of friends and family cheering Leo on and praying for him and our family.
“A lot of times people will say, ‘oh I’m so sorry he has spina bifida’, but I don’t feel that people need to apologise for his condition.
“He doesn’t let it stop him. I love it when people ask questions. If they see him in his wheelchair, I love it when they come ask me about his chair and comment on what a happy child he is.
“The only question we get that really makes my heart break is when people ask, ‘what’s wrong with him?’ There’s nothing wrong with him; he came to earth exactly as he was supposed to.
“I feel very blessed to be Leo’s mother. I get comments all the time about what a special personality he has and how happy he is.
“I feel incredibly blessed that I have been entrusted with the responsibility to be his mum. The spina bifida community is a special place full of the kindest people and I’m grateful to be able to be part of it.
“I try not to worry about Leo’s future and try to take things one day at a time. We set goals for his future yes, but I have to take things one day at a time.
“I want other families to know that even though the days can be hard, they are all worth it. Leo exudes love and happiness and I can’t imagine this world without him.
“When people hear spina bifida or get the diagnosis, they are immediately told all of the challenges they will face and everything that makes them different.
“We choose to focus on Leo’s accomplishments rather than his challenges; Leo has accomplished so much and will continue to do so. We want everyone to see the positivity in spina bifida and all that can be accomplished.”