Although Twin-to-Twin Transfusion Syndrome is extremely rare, when it does occur, it’s serious and life-threatening to both infants. Receiving a diagnosis of TTTS can be devastating and overwhelming, but educating yourself about what the condition is and how it can be treated can help you better understand what to expect so you can work with your care provider.
Meet Uriah: The first baby in North Texas to undergo surgery before he was born.
A quick online search of spina bifida — one of the most common birth defects affecting 1,500 to 2,000 American babies a year — generates phrases such as “not curable” and “damage to the spinal cord and nerves can’t be reversed.” But as Sarah Prowell and Sean Kirby watch their newborn, Uriah, kick his legs between naps, they are hopeful for his future.
Topics: spina bifida
It was the news that no expectant parent wants to hear: “Your baby has a serious medical condition.” Luckily, for one family from Tyler, Texas, they soon learned that doctors at the Fetal Care Center Dallas were ready with help and hope for their unborn baby.
Topics: spina bifida
Back in 2015, in a single moment, our world was turned upside down. Our first son, Abel Paul, was diagnosed with Trisomy 18 in the first trimester of our high-risk pregnancy. Everything we had mentally envisioned and emotionally longed for had suddenly shifted with the news that our boy’s earthly life would likely be much shorter than any parent would hope for. With the weight of that reality came two competing approaches as to how someone in our shoes ought to proceed.
The first approach was from the original doctor who confirmed Abel’s condition and said something along these lines: “If it’s indeed true that we’re going to lose this baby at some point, why torture ourselves by dragging out the inevitable? Wouldn’t it be best and easiest for all parties to end this pregnancy now and try again?”
Have you ever had someone in your life experience a profound loss? Did you immediately know how to comfort and care for them? If so, you are one of the very few. For most of us, when the people we care about are grieving, it is common to feel unsure of what to say or do. We all want to help, but don’t really know how.
Our son, Abel Paul, was conceived with a chromosomal abnormality called Trisomy-18 back in 2015 and passed away when he was a baby. In the weeks and months that followed, we were the recipients of wide-ranging care and support from the people in our lives who loved us. We found that folks always meant well, but some efforts were deeply encouraging and helpful while other attempts were underwhelming and even hurtful.
Since founding Abel Speaks and walking alongside parents who have chosen to carry a child with a life-limiting diagnosis, we have gradually shifted roles. Three years after Abel’s life on earth, we have moved from those receiving comfort after a loss to those hoping to extend it to others. Here are three pointers that have served us well as we’ve sought to offer care and comfort to families that have lost a child after a high-risk pregnancy.