Many of us were drawn into the story of the diagnosis and birth of baby Bennett. You may recall, he was not expected to survive. But his parents have given him every opportunity to thrive (which began with the decision to carry him to term). Just look at him now!
Kelly says that he has developed brain tissue. I wonder if parents are told that this is possible? Thankfully, there is a great organization, The Pediatric Hydrocephalus Foundation, which will make sure that parents are given the latest information and the full range of possibilities when a child is prenatally (or postnatally) diagnosed with hydrocephalus.
ABC News took Bennett’s story “national”. Read it, and then please share the story with as many people as you can.
Pittsburgh Mom Determined to Help Son
“What we saw on that screen, the head area had just black,” Frey said of the ultrasound.
A routine ultrasound in 2009 revealed a chilling vision: Where there should have been brain tissue, there was nothing, just black. The fetus was suffering from severe hydrocephalus, which is a buildup of fluid on the brain. Most people are born with the ailment or suffer from it after a severe head injury.
The trauma didn’t stop there. Bennett was also suffering from Dandy Walker Syndrome, a congenital brain malformation of the cerebellum. The cerebellum controls movement.
The doctors told Frey and her husband, Jason, that their son had little chance of surviving past birth.
“It was the deepest grief we have ever known; they’re telling us he is going to die,” Frey said of the diagnoses.
The couple decided to continue with their pregnancy. They say that Bennett’s birth is a miracle. continue
Sixth-grader Christopher Cobun, born with ectopia cordis, tells the world that he is “just a normal boy”, and apart from having spent almost a year in the hospital upon birth, over a year with a ventilator, and countless therapies, that may well be close to true. But no one can deny that his mother, Stacey, is extraordinary.
His success is a testament to his tenacious mother, Stacey Wehmann, who decided almost from the moment she learned about her baby’s fragile condition that she would do things her way. No, she would not terminate the pregnancy. No, Christopher would not be tethered to a ventilator for the rest of his life. And yes, she would put him on roller skates when he was barely out of diapers. “She worries like any mom,” says Christopher. “But she doesn’t stop me from being me and having fun.” continue
Read about yet another survivor of ectopia cordis, now in his 30’s, and his ever-devoted mom: “Don’t be afraid”: Incredible young man survives ectopia cordis
We are really at a different place – in the world of helping families with a prenatal diagnosis – than we were 10 years ago. The services that have sprung up in response to the very specific needs of parents, such as perinatal hospice, bereavement and celebration of life photography, even songwriters are thriving. It will always be scary and heartbreakingly awful to find out that your baby has life-threatening defects. But thanks to the internet, and the solidarity of shared experience, more parents will know that the moments leading up to loss can be filled with raw sweetness and a beauty that only comes from choosing to welcome life into the world, even a very brief one.
And so, the Davis family, who graciously share their too-few moments with baby Jacob in this video, accept the time they have and fill it with tenderness and tears. Jacob had been diagnosed with Pallister-Killian syndrome, which is not typically life-threatening (see Simon’s story). But Jacob was also diagnosed with a congenital diaphragmatic hernia, complicating his prognosis. He was not expected to be with them for long.
When Sandi contacted BNA several years ago, the story she told was truly remarkable. Her 5th child, Grace, had been prenatally diagnosed with skeletal “anomalies”. Over and over, ultrasound after ultrasound, the doctors prepared Sandi and her husband for the inevitability of delivering a baby who would not live for more than a few hours. Even at 35 weeks, the specialists insisted that Grace would be born with thanatophoric skeletal dysplasia – and there would be nothing they could do to help her.
Sandi recalls, “We provided a birth plan, which stated that there would be no ventilation. Our birth plan stated that the baby was to be wrapped in a blanket and given to my husband and me after birth so that we could spend time with her – her predicted life span “4 to 6 hours”. The hospital agreed to let our 4 other children come to see their sibling on her birth day. We talked to our priest who agreed to come to the hospital to baptize the baby when she was born. The only other arrangements we had made were with the cemetery.”
But nothing went as planned . . . or expected. Sandi went into labor a few weeks early, her husband experienced a miraculous intervention that allowed him to be at Grace’s birth when he was supposed to be out of town for business, and from there began something truly incredible, something miraculous, something truly amazing. No, no, no. I don’t believe in spoilers. You’ll have to see for yourself!
There is a lovely local news update on Sandi’s new blog too: There Can Be Miracles (I’m leaving off half the title so I don’t spoil the surprise!)
Kristin has shared with us about the life of her baby girl, Hailey Marie, born with trisomy 18. Kristin’s story is a little bit different from many of the others because while an early ultrasound found something alarming, the follow-up screening test seemed to alleviate concerns that her baby would be born with a genetic syndrome. Yet, Kristin could not shake the feeling that something could be wrong. Several months later, baby Hailey Marie was born with a birth defect, gastroschisis, and they would soon learn, trisomy 18. Please read about how Kristin and her husband embraced the life of their baby girl at BNA, and read more about Kristin’s reflections on this very fragile yet beautiful child she was given at her blog : In His Hands Bonus points to those who find “cupcake head” on the blog!
This is one of the those rollercoaster stories that has your knuckles turning white from the first moment. Stephania De Mayo had recieved a new heart in 2008 after restrictive cardiomyopathy had destroyed her own. Little did she know that 16 months later she would earn the distinction of becoming the first known heart tranplant to give birth to living, healthy twins. I say “earned” because in fact, she had to fight for this honor. The twins were struggling for life as twin to twin transfusion syndrome compounded the already difficult and unusual pregnancy. Stephania was resolved to do all she could to see her babies through, “I had to be an advocate for them. I couldn’t take one of their lives.”
Read the story here.
This is an incredibly beautiful story, where faith, outreach, and companionship intersect – where the rubber meets the road. A woman devoted to helping women find a better alternative to abortion meets another young woman who had every reason to abort, “a hard case”. The baby in this story was not able to survive – her lungs and kidneys could not sustain her – and yet the desire to allow her to live out her natural life, however brief, was rewarded ten-fold. This is also a story of betrayal. The institutions that should have been most capable of recognizing the dignity of a tiny baby, even with fatal birth defects, failed miserably. And . . . it is a story still unfolding. Here you can find the first two installments, and links to the rest of the series.
See also our BNA stories of moms facing various fatal prenatal diagnoses. And, mentioned in the story is St. Gianna’s intercession for a pregnancy that had lost amniotic fluid, putting the baby in peril. See here many other accounts of Catholic saints who have come to the aid of babies and children.