The September installment of Voluntography showcases the Bohn family. Tanya and Mike were referred to me through Ronald McDonald House here in Edmonton. Images of four week old Arielle and her parents were captured at the Stollery Children’s Hospital.
The following is an email Tanya sent me sharing Arielle’s story.
Arielle was diagnosed with a heart condition when I was 18 weeks pregnant. They told us she had Hypoplastic Left Heart Syndrome. Through follow up fetal echocardiograms the doctor was having trouble seeing her pulmonary artery and later found that she had a second problem called Truncus Arteriosis. We were expecting to have a normal delivery and be in the hospital in Saskatoon for a few weeks before being transported to Edmonton for surgery. Three days before her due date I felt her movement decrease and went in to check with my doctor. Six hours later we were told that my amniotic fluid was almost all gone and the placenta had stopped working, resulting in an emergency C-section that day. Our beautiful baby Arielle was born August 26, 2013 at 11:42pm and looked amazing. It was hard to believe there could be anything wrong with her heart. On August 27th around 4am she had a Myocardial Infarction and needed to be resuscitated. We were emergency airlifted to Edmonton not knowing if she would be strong enough to make the trip. After we arrived and met with the doctors we were informed that surgery was no longer the best option and that Arielle would need a heart transplant. Through constant observation they decided that a palliative surgery (Pulmonary Artery Banding) was needed while waiting for a transplant in order to restrict the blood flow to the lungs which then increased blood flow to the body. She’s been doing very well since surgery and every day is something new. We feel blessed for every moment with Arielle and continue to pray she will receive a heart soon.
We thank you for the precious memories these photos provide!
Tanya, Mike and Arielle
As I was scrolling through Facebook, waiting for my photos to upload, I came across a Huffington Post article someone had shared titled Dear NICU Nurse. It was the perfect article to link into this Voluntography session. Reading the letter had me in tears, and I’m sure I speak for all parents with NICU experience when I say, it rang true. It made me think again of all those people who were involved in Kane’s care.
The article also made me want to draw attention to another group of volunteers. The Neonatal Intensive Care Unit Family Advisory Care Team (NICU FACT) is “a committed group of families, staff, and physicians, collaborating to improve the NICU experience for all involved.” NICU FACT is a part of the Stollery Family Centred Care Network, which I learned about during our stay at the Royal Alex NICU. This week the group is picking up again following the summer and I am looking forward to finding out what my role will be.