The Bowen family received the exciting news in early September 2017 that they were expecting their second baby due in May 2018! They were thrilled to add to their family and give Cora a younger brother or sister.
On January 3rd, Emily went in for her 20 week ultrasound expecting to find out the gender of their new baby, but were instead devastated to hear the ultrasound tech say, “I am really worried about this baby.” After consultation from a doctor and some further measurements of Baby Bowen, the doctor speculated the baby had a lethal form of skeletal dysplasia known as Thanotorophic Dysplasia, but they wouldn’t truly know without more measurements and genetic testing. The doctor discussed termination options with the family, but Emily drew on her incredible strength, bravery, and deep trust in her faith in God to carry her baby to term. Despite this news, Emily and Gregg were thrilled to discover they were having another girl whom they decided to name Hazel Grace.
Journey for Answers
Immediately, Emily was scheduled for an amniocentesis, comprehensive blood tests, and further ultrasound measurements the following day. Unfortunately, results from these initial tests came back inconclusive which drove the family toward more extensive blood tests to conduct genetic carrier screenings. While waiting for the results of these further tests, the Bowen’s met with neonatologists, social workers, genetic counselors, and palliative care doctors to discuss plans and options for Hazel’s birth and quickly impending death. The family discussed intervention techniques, but eventually decided to provide comfort care with the possibility of in-home hospice care if a miracle allows for Hazel to live several days.
On February 15th, the results of the genetic tests provided additional sad news to the Bowens. Baby Hazel Grace was officially diagnosed with Autosomal Recessive Short Rib Thoracic Dysplasia Type III. The diagnosis is extremely rare and only affects 0.3% of every 10,000 births. The tests also showed both Emily and Gregg to be carriers for a marker on the DYNC2H1. These results mean that for every natural pregnancy, they have a 25% chance of having a baby with the same diagnosis.
What the Future holds for the Bowen's
The Bowen’s plan to have Emily carry their baby to 37 weeks permitting there aren’t any problems with fluid build-up (a common problem with this diagnosis) or preterm labor. Emily and Gregg's deep faith and cimmitment to family provides them the desire to have more children, but with such a high probability of another lethal diagnosis, they will have to undergo complex In Vitro Fertilization (IVF). For any young couple desiring children through this process, IVF is already an expensive and emotional undertaking, but IVF for the Bowen’s will require further intervention in the form of testing the viability and genetics of each embryo prior to implantation. They trust God to guide them through their current and future journeys.
How You Can Help
The Bowen family has been extremely brave in facing and sharing such devastating news about their loved and cherished baby girl. While they are trying to mentally and emotionally prepare for the coming days, weeks, and months in their journey with Hazel, the family has already received staggering medical bills and know there are many more to come. The genetic counseling and testing has provided them with answers to Baby Hazel's diagnosis and the risks moving forward are not covered by insurance. Additionally, with so many unknowns with Hazel’s prognosis and medical needs, Emily and Gregg are worried about their ability to pay for the intervention and care they need to prepare for her death. Please keep this brave young family in your prayers, and consider a monetary donation towards their quest for answers and final arrangements to honor Baby Hazel's short, yet miraculous life.
Updates will be provided as the family receives more information.
- Julie Snider
- Spencer Mallen
- Sarah Carr
Organizer and beneficiary
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