At their 20-week scan, Hayley Martin and her husband, Scott, were devastated to learn that their baby daughter, Ava Joy, wouldn’t survive past her birth.

Ava had been diagnosed with a “rare genetic disorder called bilateral renal agenesis,” according to the couple’s JustGiving page. She would not survive the pregnancy. The always fatal diagnosis meant that baby Ava’s kidneys would not fully form. In addition, she would lack a bladder, and develop a physical deformity known as Potter’s Syndrome.

However, Hayley turned down the doctor’s offer to terminate her pregnancy. Instead, she bravely decided to carry her baby girl to her full term so that they could donate her organs to other babies in need. Metro reported that Hayley said:

“Our child is going to die no matter what, but if we can try and save somebody else the grief we are going through, it will all be worth it. A part of her will live on, she won’t be completely gone. She will be alive in somebody else.”

The incredibly brave couple is also behind a new charity project entitled “Ava’s Butterfly Baby Pathway.” The charity will be for other families suffering a similar loss by providing a “making memories pack,” that includes a journal with which grieving parents can capture their precious time with their babies. In addition, the Martins’ JustGiving page reads:

Our mission is to raise awareness of fatal fetal conditions such as Potters Sequence and improve the support given to familes [sic] who are grieving for their baby even though they are still alive as resources are only really available to families who’s baby has already passed away and not before.

Hayley is intent on creating “something positive out of this agonising experience,” according to Metro. However, there are certain stipulations that accompany Ava’s ability to be a donor, for example, she must weigh a minimum of 5.5 pounds. And while many of her organs will be unusable, “her heart valves, liver cells and pancreas are likely candidates.”

If baby Ava survives past labor, doctors are hopeful that the Martins will have at least a few minutes of time with their daughter before she passes.

Hayley said:

“Even if I get just one second of her opening her little eyes and looking at me – that would be a moment that no one can ever take away from me.”

To donate to the couple’s fundraising efforts, please visit their JustGiving page.

Leave a comment

We are excited to announce Dearly has joined forces with Mama’s Uncut. Helping Mom’s across the United States answer questions on life’s big challenges.