How Eagan's Lily Reitsma Beat the Odds, Part 2

Editor’s Note: On Wednesday, Eagan Patch published part one of , a profile of Eagan residents Sarah and Mike Reitsma, whose daughter, Lily, was born with Turner Syndrome. February is Turner Syndrome Awareness Month.

It should have been the most exciting period in her life: After a miscarriage, and then a difficult first pregnancy, Sarah Reitsma was halfway through her second pregnancy, and looking forward to the birth of a beloved daughter.

Then, doctors told her that the child in her womb might have Turner Syndrome, a crippling and often deadly malady. What was supposed to be exciting turned into a nightmare of anxiety and sometimes overwhleming sadness.

Unsure whether their daughter would survive to birth, Sarah and her husband, Mike, struggled to get through each day. When people posted comments on Sarah’s Facebook wall asking about the baby, she wasn’t sure how to respond. Mike dodged inquiries from curious co-workers.

“Everyone’s so excited for you, and you’ve suddenly lost your excitement,” Mike remembered.

The Nightmare Unfolds

Eventually, Sarah poured out all her fear and anger into a blog post, titled “And The Bubble Bursts”.

“I feel like I'm in a haze walking outside my body watching a nightmare unfold,” she wrote. “After miscarriage, the difficult birth of my son, and now this, I feel that somewhere I must have done something horrible in my life to deserve all of the sadness that has happened to me and my family.”

Expecting another miscarriage, Sarah’s heart sank.

“I didn’t look at any baby stuff, and we just shut the door to the room that we were going to make up into the nursery,” Sarah said in a recent interview. “I tried to disconnect myself from it. I though if I could shut myself off to it, it would be easier to deal with when this baby dies.”

Three weeks after the initial ultrasound that found a cyst attached to Lily's head and neck, the Reitsmas had another check-up. The doctors told Sarah that her baby was still alive, but that her prognosis was grim—a refrain that was frequently repeated as the weeks went by and the Reitsmas were subjected to a  battery of evaluations and tests.

Doctors gave the child a 2 percent to 7 percent chance of surviving to birth, Sarah remembered. They also told Sarah that the baby’s complications put her at a higher risk for preeclampsia and HELLP Syndrome—problems that plagued Sarah’s first birth.

In July, 2011, the Reitsmas received bittersweet news.

The cyst on the baby’s head and neck had shrunk, but specialists—able to get a better look at the back of the baby’s skull—suspected that a portion of her brain may be protruding into the deflated tissue. If the baby lived long enough to be delivered, a neurosurgeon would have to operate to remove the growth.

Then, fate finally turned in Sarah and Mike’s favor.

A Lucky Break

Against all odds, Sarah’s unborn baby survived to 37 weeks. Because the child’s lungs were fully developed, doctors decided to go through with another Caeserean section, followed by brain surgery to remove the part of the baby’s brain doctor's suspecting was protruding through a hole in her skull.

And then, when Sarah’s baby—named Lily—was born Sept. 16, 2011, doctors couldn’t find any trace of the protruding brain tissue in the deflated membrane outside her head, which meant she wouldn't have to undergo any complex surgery.

The Reitsmas’ lucky break was tempered by another piece of more sobering news: Doctors confirmed that Lily had Turner Syndrome.

Girls diagnosed with Turner Syndrome can live a healthy, fulfilling life, Sarah said. But they may also face a wide range of health complications over their lives, according to the Turner Syndrome Society of the United States. Those complications include: Delayed puberty, heart defects, infertility, kidney, Thyroid and liver issues, scoliosis and certain learning and social difficulties. They may also have an unusually short stature and a webbed neck.

To combat the short stature and delayed puberty, doctors often administer growth hormones and estrogen to those with the condition, according to Turner Syndrome Society.

Living With Turner Syndrome

Lily, who is now nearly 5 months old, is a curious, wide-eyed infant. She will likely undergo one more cosmetic surgery to remove a small amount of excess tissue from the back of her head—a remnant of the cyst that used to balloon from her small body.

Like any other proud parent, Sarah looks forward to seeing her daughter grow up. To learn more about living with Turner Syndrome, the young mother attends a local support group for women with the condition.

Eventually, Sarah will have to explain to Lily that she is different from other children. The Reitsmas also worry that other children may tease their daughter as she gets older, but both want Lily to live as normal a life as possible.

“She was put here for some special purpose, otherwise I don’t think she would have made it,” Sarah said. “To me, she can do whatever she wants to do, she can do whatever she puts her mind to. I don’t want to put some sort of limit on her.”

Editor's Note: Click here to read a blog post on Turner Syndrome from Sarah Reitsma, Eagan Patch's newest blogger.