Pregnancy is supposed to be an expectant, joyful time.
However, for one Florida couple, their happiness was briefly dimmed after they went in for their 20-week checkup and learned that the doctors thought they should ‘let this one go.’
The unnamed couple were absolutely thrilled at the prospect of bringing their second child into the world, but were devastated to learn that the child had a condition that would make her birth much more risky.
Dad went online to share the couple’s incredible journey, from the diagnosis onward, sharing photos and snippets of information on the website Imgur.
There, he laid out a scenario reminiscent of the story of a mom who gave birth despite her own rare genetic disorder.
The main difference? In this latest story, it’s the baby who suffers from a rare genetic condition, one that increases her risk during birth — so much that doctors actually advised the parents to ‘let this one go,’ gently suggesting that she probably wouldn’t survive birth.
Scroll through to see her parents’ fiery response!
Photo Credit: Pixabay
Recently, a dad posted a lengthy story on the website Imgur, explaining the long and convoluted path that brought his baby daughter (the couple’s second child) into this world.
It all started at her 20-week check up, when her doctors noticed something ‘off’ in the images.
If you look at the sonogram, you can see a black blot on the image, on the baby’s abdomen.
Dad writes, “At 20 weeks our baby was diagnosed with a congenital diaphragmatic hernia (the black hole on the left is her stomach … in her chest)….survivability could be less than 50% depending on several factors. One of our perinatologists told us it’s better to just ‘let this one go.’”
The couple had no interest in letting their little one go.
They knew her chances might be slim, but they had to do everything they could to safely bring her into the world.
They knew that their little girl was already in a tough position. As Dad notes above, her stomach had moved out of place and into her chest cavity.
Then, the expectant parents got their first break during a consult at Johns Hopkins All Children’s, a renowned facility in Houston.
Despite the migrating organ, tests indicated that their little one wouldn’t need surgery in the womb. Waiting until after the baby was born increased her odds dramatically.
The family made the difficult choice to relocate temporarily to Texas, leaving their home in Jacksonville, Florida, to make sure their baby got the best treatment in the world during the pregnancy and after she was born.
Her father describes her birth online, writing:
[At] 39 weeks…our second child was born, immediately intubated and moved to critical care.
She was intubated, sedated, on dopamine for blood pressure support, had multiple peripheral and central lines, and was on parenteral nutrition.
I’ve never felt more torn than during the first few minutes after delivery.
In one side of the OR my daughter was being intubated and was barely clinging to life… on the other side my wife was recovering from having just given birth.
I parked where I could see both and let Mom know her baby was being taken care of.
At just four days old, his daughter had surgery to repair her diaphragm. From then on, it was fairly smooth sailing.
He goes on to explain that he thinks other parents should know that a congenital diaphragmatic hernia (CDH) isn’t necessarily a reason for despair.
To this dad, the point is that doctors who advise parents to ‘let go’ of a baby with a CDH diagnosis might not understand that.
There was a realization in talking to other parents that CDH is misunderstood.
The results of single centers is being lost in the noise of bigger data.
The complications are intimidating and the prognosis grim in the wrong hands.
It is much better in the hands of those who have dedicated their lives to caring for CDH babies.
He continues, “I’m not mad that we were told to let her go. It made me realize that there are diseases and conditions that genuinely need awareness in a world that is saturated with awareness campaigns for well-known problems.”
His hope is that more parents facing a scary diagnosis of CDH won’t get overwhelmed by the statistics.
Going to a specialist team like the one at All Children’s changes the odds significantly, and makes stories like this one possible.
He goes on to advise parents who are dealing with CDH or a similar condition to check out Tiny Hero, and other, similar programs that promote CDH awareness and help parents navigate the overwhelming process.
As for his little family? “Today is day 29, post-operative day 25, and we’re going home with our baby. I don’t ever intend on letting her go.”
If your heart was touched by this sweet, uplifting story, be sure to SHARE for all the toughest fighters you know!