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,
After consulting more physicians and getting second opinions, Elin’s parents decided on comfort measures only at delivery.
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.
The following day, Kyson passed away in his father’s arms.
