#so my group chose this hospice and we emailed them

[chickenfetus]

part 2

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A new life for Lynkin after encephalocele surgery

When you meet Lynkin Bell, the first things you notice are her big personality and chubby cheeks. You might also see how she adores her brother Lukis and hamming it up for the camera. But you’d never guess that this playful 14-month-old from Texas wasn’t expected to survive, never mind talk, stand or play peekaboo like a pro.

And yet, thanks to her parents’ faith and persistence — and surgery at Boston Children’s Hospital — Lynkin can do all those things, and lots more, with the gusto befitting any toddler her age.

“It’s a miracle,” says Kaylen Gaston, Lynkin’s mom. “We were told so many times she wouldn’t make it, and here she is defying all odds.”

It was during Kaylen’s routine 18-week prenatal visit that she and Lynkin’s dad Mark first learned their unborn baby girl had an encephalocele, a rare neural tube defect that causes brain tissue to grow outside of the skull. Their doctors did not offer much hope.

“The specialists in Texas told us her chances of surviving the pregnancy were very slim, and if she did survive she would face many disabilities,” says Kaylen. “They talked about termination.”

Choosing hope

But the couple wasn’t ready to give up on their daughter. Online, they discovered a group for parents of babies with an encephalocele. Not only were these children surviving, but some were also thriving.

“Once we had that small sliver of hope, we hung onto it. We decided we had to give our baby a chance,” says Kaylen. They had a baby shower, shopped for baby clothes and decorated the nursery.

“We celebrated her in every way we possibly could,” says Kaylen.

Lynkin’s encephalocele before surgery.

A first cry brings more hope

Kaylen held onto that hope as she was admitted to the hospital for a C-section, even though she was acutely aware her baby might not survive the day.

“When I heard her cry for the first time, I was overjoyed,” says Kaylen. “I thought we had gotten over the biggest hurdle.”

But the day after Lynkin’s birth, Kaylen and Mark received distressing news.

“We met with a local neurosurgeon and a group of other specialists in Texas. They told us that because Lynkin had a major blood vessel inside the encephalocele that surgery wasn’t possible — she would either die of a stroke or a hemorrhage.”

A difficult choice

Kaylen and Mark were given two choices: take Lynkin home for hospice care or keep her in the hospital for palliative care. They chose home and hospice.

About two weeks into hospice care, they remembered the online support group they had found before Lynkin’s birth. They read about Eva, a little girl from Salt Lake City whose parents had also been told surgery wasn’t an option. But Eva had undergone surgery at Boston Children’s Hospital and was doing well.

“We reached out to Eva’s parents and they told us to contact the craniofacial program at Boston Children’s,” says Kaylen. “I called right away and they took care of everything for us, they got all of our records sent up there so their doctors could review them.”

Then they waited.

Lynkin and her family.

“I was really expecting to hear a ‘no,’” says Kaylen. “I thought if the Texas surgeons can’t do it, how can they do it in Boston? We were never once told to look for other options for surgery.”

Meanwhile, Lynkin’s encephalocele was growing larger every day. “We were so afraid it would rupture that we couldn’t really hold her,” says Kaylen.

A few days later, an email from the Boston Children’s team delivered hope. Dr. Mark Proctor, neurosurgeon-in-chief and Dr. John Meara, plastic-surgeon-in-chief, had reviewed Lynkin’s scans and thought she could benefit from surgery.

“I was so stunned. I called Mark at work and we cried together,” says Kaylen. They scheduled surgery for February 16, 2016 and made plans to travel to Boston.

“The surgery went perfectly,” says Kaylen. Lynkin’s blood loss was minimal and she didn’t need a blood transfusion or have a seizure or stroke, which are risks with the surgery. After just five days in the hospital, Lynkin was discharged and the family traveled back to Texas together.

“This is why we flew 1,800 miles from home. I wasn’t going to risk my daughter’s life for some ordinary doctors. I wanted the best of the best.”

Fast forward to toddlerhood

It’s been over a year since Lynkin’s surgery, and she and her family were recently back in Boston for a follow-up appointment.

“I am very pleased with how well Lynkin has done since her operation,” says Meara. “She has exceeded our expectations and we continue to be impressed as she reaches new developmental milestones. We look forward to following Lynkin’s progress as she continues to grow and develop.”

Lynkin’s parents couldn’t be happier.

“She’s a happy little baby who loves everything,” says Kaylen. “I can’t imagine our lives without her.”

Learn more about Boston Children’s Craniofacial Program.

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