Baby Elin's Story

Elin’s parents had their first ultrasound on Valentine’s Day, and the doctors said everything looked great. At 17 weeks, the caregivers took a closer look at baby Elin’s anatomy.

“I could tell by the sonographer’s reaction that something was wrong.”

Elin had an encephalocele, a small hole in her heart, and cystic hygroma in her neck. Elin was diagnosed with iniencephaly apertus (an uncommon and very rare neural tube defect having retroflexion of the head without a neck and severe distortion of the spine associated with an encephalocele).
For Elin’s mother,

  • “The news was devastating considering this was going to be my last child and I wanted a healthy baby.“
  • “I felt like I couldn’t breathe, and I could no longer keep my composure.”
  • “I left the hospital that day angry, heartbroken and feeling hopeless.”

After consulting more physicians and getting second opinions, Elin’s parents decided on comfort measures only at delivery.

  • “She stayed asleep the whole time and when she passed the world stopped. I was no longer angry; I was sad, but at peace.”

Kaele’s Story

Kaele was pregnant with twins, a boy and girl. At 25 weeks, Kyson and Josie were born prematurely. Both Kyson and Josie had underdeveloped lungs, high blood pressure, brain bleeds, high blood gases, and were jaundiced. The health care team was initially uncertain of a plan of care.

“The doctors weren’t certain what approach to take. About 15 days into their lives Kyson’s brain bleed got bigger. They were sure it was from the high blood pressure medicine, so they lowered his dosage and his blood pressure spiked, so they put him back on it.”

As Kyson’s bleeds continued his doctor called for a meeting with the health care team and the family to discuss options. One option was to focus on the bleeds and stop high blood pressure medications. The other was to focus on the high blood pressure and not the brain bleeds. The chances of survival and survival without neurological impairment were small.

  • “Then I heard DNR. I lost it. I wasn’t ready. No one is ever ready.”
  • “We knew it was the right thing to do – we didn’t want him to suffer anymore; working harder than his little body could handle.”

The following day, Kyson passed away in his father’s arms.

Much of the content for this booklet was provided by the following.
The Royal Children’s Hospital
50 Flemington Road
Parkville 3052 Victoria Australia
Dominic Wilkinson, Lynn Gillam, Jenny Hynson, Jane Sullivan, Vicki Xafis