When she was three months pregnant, Veronica and her family received information that would change their world forever. She learned that the child she was carrying, Tommy, had been diagnosed with hydrocephalus.

Hydrocephalus occurs when there is an excess of fluid in the brain, causing damage to brain tissue. As a result, Tommy’s mobility was impacted. “He doesn’t walk, sit up, or hold his neck,” shared Veronica. Tommy is also legally blind and deaf. “His vision isn’t an eye problem – it’s neurological. Once his brain can make the connection, he can see images,” said Veronica. “He can also hear, but it sounds muffled like he’s underwater.”

After numerous doctor’s appointments, three shunt surgeries, and a hip dysplasia diagnosis, Tommy and his family had been through a lot.

“The first few years were very, very tough as parents,” shared Veronica. “But it became easier and more natural as time passed by.”

In January, things took a dramatic turn for Tommy. “I started to hear wheezing coming from Tommy’s chest. I made a doctor’s appointment for the following day,” shared Veronica. “Then, that same day, Tommy started changing color. He went really pale and was struggling to breathe.” That’s when Veronica rushed him to a local emergency room, where he was later intubated and put on life support for four weeks.

“We didn’t get to see his eyes for nearly a month,” shared Veronica. “Every time they tried to extubate him, he failed to breathe. It just kept getting worse and worse.”

Tommy then received a tracheostomy, a procedure that creates an opening into an individual’s windpipe, allowing for the insertion of a breathing tube. “Within 12 hours of the procedure, he opened his eyes and started smiling,” shared Veronica.

“It was very, very scary. It felt like months, not just four weeks,” shared Veronica. “But now he’s happy, loving life and so are we.”

Tommy received the tracheostomy on Valentine’s Day and was transferred to La Rabida three weeks later. “Because the trach was new for us, we needed proper training,” shared Veronica. “We were able to get the training we needed at La Rabida.”

Tommy receives a variety of treatment while at La Rabida. “He gets everything here – respiratory treatments, physical therapy, speech therapy, occupational therapy. It keeps him stimulated, which I like,” shared Veronica. “And the nurses - the nurses at La Rabida are absolutely amazing.”

The staff at La Rabida work to make the hospital an enjoyable experience for everyone, including the parents. “We love going to the playroom in Child Life. One time there was a violinist playing music – that was an amazing time. Tommy loves music.”

Veronica has noticed so many positive changes in Tommy since arriving at La Rabida.

“Tommy seems much more alert since being at La Rabida. He seems much happier,” shared Veronica. “Before, I used to have to work really hard to make him smile, and now he just sees my face and he’s grinning from ear to ear.”

This story was featured in the April 2020 issue of eCurrents, La Rabida's monthly newsletter. To view the April issue of eCurrents, click here.