Mom Celebrates Each Day She Has Left With Her Dying Baby

Kinsley Grace GrabAmanda and Peter Grab have taken to throwing monthly birthday parties for their baby. No, they're not spoiling their 5-month-old. Or maybe they are, but it's only because they never know when it will be their last chance. Kinsley Grace Grab was born with spinal muscular atrophy or SMA.

Doctors can't tell her parents if the baby girl with bright blue eyes and a tuft of blond hair will live for months, for weeks, for days. SMA is fatal. There is no cure.

And as Amanda told The Stir, "Nobody thinks it can happen to you, but it CAN," she said. "It happened to us."

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In fact, type one SMA is the leading genetic killer of children under age 2. According to the non-profit Families of SMA, the motor neuron disease is considered rare, but it's fairly common -- 1 in 6,000 babies born are affected, and about 1 in 40 people are genetic carriers.

It takes two genetic carriers of SMA coming together to make a baby with SMA.

Peter and Amanda Grab were both genetic carriers.

But they didn't find out until after their newborn daughter began struggling to breathe, after they'd gone to three different pediatricians and two neurologists to find out why their little girl struggled to move.

"She was really weak," Amanda says of Kinsley in her first month. "But everybody kept saying, 'Every baby progresses on their own.'"

The emergency room nurse and her US Navy husband knew better. They pushed for answers, answers they finally got from the doctors at the Naval hospital in Portsmouth, Virginia.

The neurologist who diagnosed Kinsley with SMA told Amanda, "I can't promise you a week, I can't promise you a month." The disease could take her at any time.

The Grabs have learned that two parents who carry the SMA gene have a 50 percent chance of having a baby who is also a carrier, a 25 percent chance of having a baby who is totally unaffected, and a 25 percent chance of having a baby with what Amanda dubs "full blown SMA."

"Kinsley unfortunately got that 25 percent," Amanda said. "And my first thought was why? What did we do wrong?"

The couple thought they'd made the right decisions. They'd graduated from the same high school in New York, and Peter had gone straight into the US Navy. He served a tour in Afghanistan and rose to the rank of petty officer, second class. Amanda went to nursing school and got a job in the emergency room. They married. They bought a house in Virginia, near where Peter is stationed. They decided to have a baby.

Healthy and in their 20s, they saw no reason for genetic testing. Because Amanda had worked at a specialty center for care and treatment of kids with significant disabilities during nursing school, they did opt for pre-natal screenings, but no abnormalities were revealed.

And then came Kinsley, a little girl who filled a hole in her parents' lives.

"A year ago, Peter and I were expecting her and so excited for the future," Amanda said. "Now we are excited for every minute we have with her and dread the future without her. We are trying to do everything possible to make her happy. We have a lifetime without her to be sad ... right now we will celebrate her life."

So in between doctor's visits and fittings for a bipap machine, in between surgeries, and in between constant wakings throughout the night to suction their daughter's lungs so she can breathe, Amanda and Peter throw birthday parties. They sing songs. They blow bubbles and let her try ice cream and hot fudge.

They try to fit a lifetime into whatever time they have left.

"We are trying to stay positive not only for her but for us as a couple," Amanda admits. "We have been through a lot. July 22 will be our three-year wedding anniversary. We have been through two seven-month deployments in that time, the last deployment being Afghanistan. I would take the stress of deployments any day over this."

Looking back, she questions their decision not to have genetic tests before conception, but the Grabs' decision is fairly common. More than half of all pregnant women undergo some sort of pre-natal testing, but there is scant reporting on parents choosing genetic testing before conception.

Facing the future without their daughter, Amanda has been forced to consider what her family will look like.

"I just can't picture our future without a baby," she says, wistfully. But at $20,000 for the sort of IVF that would test embryos for genetic abnormalities -- not covered by insurance -- whether they will ever try again for a baby is uncertain.

What is certain is their commitment to preventing other families from having to say goodbye to their babies.

"We want people to be aware this CAN happen to you," Amanda said. "It's one in 6,000 babies.

"We know that this is going to make us a stronger, and we pray that others will hear our story and reflect on their family dynamics and cherish their time together more," she added. "This has definitely slowed us down, to appreciate the now."

For more information on SMA, research efforts toward a cure, and what it means to be a carrier, visit Families of Spinal Muscular Atrophy. For more information on the Grabs, visit Give Forward.

Did you have any testing done before conception? What was it for?

 

Images via Amanda Grab

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