FEB 24, 2017 06:53 AM PST

Mother Carries Baby Without Brain to Term to Donate Organs

WRITTEN BY: Xuan Pham

The condition known as anencephaly – lacking a brain – affects about 3 pregnancies per every 10,000 in the United States. Small odds though it seems, Keri Young and her husband were unfortunate to have received this diagnosis for their 19 week old baby, Eva. Despite their unfortunate circumstances, the couple made the agonizing but selfless decision to carry the baby to term in order to donate Eva’s organs to save other kids’ lives.

At her 19-week ultrasound, Keri’s doctors discovered that Eva was developing without a brain. This condition occurs when the neural tube – the hollow structure that forms the brain and spinal cord – does not close properly. The result is an incomplete fetal head structure that can lack part of the brain and skull. The brain stem is present, which allows for breathing and heart beating, but because other parts of the brain are missing, the baby never gain consciousness. As such, the lack of this structure is incompatible with life, and anencephalic babies die shortly after birth.

Writing about the ordeal, Royce Young described their grief and his wife’s heart-wrenching decision to carry the baby to term. "Somehow through full body ugly crying, Keri looked up and asked [the doctor], 'If I carry her full term, can we donate her organs?'" he wrote.

“There I was, crestfallen and heartbroken, but I momentarily got lifted out of the moment and just stood in awe of her. I was a spectator to my own life, watching a superhero find her superpowers. In literally the worst moment of her life, finding out her baby was going to die, it took her less than a minute to think of someone else and how her selflessness could help. It's one of the most powerful things I've ever experienced,” he wrote.

Indeed, the shortage of organs continues to be one of the biggest challenges in organ donation. Doctors know how to perform the procedures, patients are ready and waiting, but the number of available organs to transplant is dismally small. On top of that, the number of suitable organs for babies and young kids in need is even more limited given their size and developing biology.

Despite the desperate need, organ donation from anencephalic babies was not always permitted. In particular, in 1990, the Canadian Paediatric Society and the American Academy of Pediatrics both issued statements ruling that anencephalic babies were not appropriate organ donors. Since then, new bills have passed to expand the donation possibilities for babies with this condition.

Baby Eva is expected to arrive on May 7, 2017. Royce Young acknowledges the bittersweet date of meeting his baby and simultaneously having to say goodbye.

“We made our choice to carry Eva to full term for a lot of reasons, but the first and foremost was to donate her organs,” Young wrote. If suitable, baby Eva can donate heart valves, corneas, kidneys, and liver cells to other babies and kids in need. Furthermore, other organs and tissues may be donated for research purposes, potentially helping scientists study how to prevent conditions like anencephaly and other birth defects in the future.

“It was just a practical endgame that in our minds, before we came to the realization Eva is alive and our daughter deserves to meet her mama and daddy, gave us a purpose to continue on. Donating was on Keri's mind from darn near the second we found out and while the experience of holding and kissing our daughter will be something we cherish forever, the gift(s) she's got inside that little body of hers is what really matters. Keri saw that almost instantly… There's another family out there hurting and hoping for a miracle for their baby, knowing full well someone else's baby will need to die first. Eva can be that miracle.”

Read more of Royce’s tribute letter to his wife here.

 

About the Author
  • I am a human geneticist, passionate about telling stories to make science more engaging and approachable. Find more of my writing at the Hopkins BioMedical Odyssey blog and at TheGeneTwist.com.
You May Also Like
APR 26, 2018
Cardiology
APR 26, 2018
New Gene Linked to Human Aortic Aneurysms
Using a web tool called GeneMatcher, scientists from Baylor College of Medicine studying defective copies of the ari-1 gene were matched up with scientists...
APR 29, 2018
Genetics & Genomics
APR 29, 2018
CRISPR Can Now Edit Genes Outside of the Cell
The CRISPR/Cas9 gene-editing tool was made from an immune defense system used by bacteria. Scientists have found it has many applications....
MAY 14, 2018
Cancer
MAY 14, 2018
What Is Computational Oncology?
Computational Oncology is an emerging field of science and medicine aimed at using mathematical and computer modeling systems to organize tumor marker profiles and hone precision medicine....
JUN 12, 2018
Cell & Molecular Biology
JUN 12, 2018
Loss of Brain Lesions may Indicate Worsening MS
New research could help doctors determine how severe a case of multiple sclerosis will become....
JUN 23, 2018
Microbiology
JUN 23, 2018
In a First, Keystone Virus Sickens a Person
A teenage boy in North Central Florida presented with symptoms that defied diagnosis....
JUN 30, 2018
Immunology
JUN 30, 2018
CD4 T Cells Responsible for Inflammatory Bowel Disease
A specific subset of immune cells could be targeted to better treat inflammatory bowel disease (IBD). A new University of Alabama at Birmingham study point...
Loading Comments...