This Saturday October 15, 2016 is the first time that Ontario is marking the internationally recognized Pregnancy and Infant Loss Awareness Day. After having a miscarriage with our first pregnancy in 2013 and a healthy son born in 2014, my husband and I hoped that we would not have to mark this day this year. February 18 2016 was the day that changed our lives forever. What had started out as a normal and uncomplicated pregnancy all crumbled into pieces during our routine 19 week ultrasound. That night we received a call from our midwife, the results had come back and the radiologist had not been able to see kidneys and the amniotic fluid level was very low.
On Monday, February 22 2016 after a second ultrasound at the General Hospital, the doctor told us our baby would have no chance of survival after birth. Our little baby had bilateral renal agenesis – meaning no kidneys. This condition happens 1 in 5000 pregnancies. There is was no measurable amniotic fluid because of this condition, which meant that our baby’s lungs were not able to develop enough for him to survive. I had other complications including a placenta previa. The two choices that were available to us were to terminate our pregnancy or continue with the pregnancy knowing that our baby would likely not survive. With the support of our friends, families and church we decided to carry our pregnancy to term. Our obstetrician, Dr. Bonin from Maternal Fetal Medicine at the General Hospital referred our case to the palliative care team at the Roger Neilson House through the CHEO Palliative Care Outreach program.
In March, we met with a palliative care doctor, nurse and social worker at Roger’s House who provide support through the perinatal hospice to families in our situation. From the Roger’s House website: “The Perinatal Hospice is an innovative program offered collaboratively by Roger’s House and the Children’s Hospital of Eastern Ontario (CHEO) Palliative Care Outreach Program. It is a model of family centered care for families whose babies are likely to die before, during or shortly after birth. It includes comprehensive support from the time of diagnosis through the birth and death of the infant, and into the postpartum period. Central to the services provided are the development of a specialized birth plan, legacy building and memory making as well as ongoing bereavement support for families and siblings.”
Our son, Aaron Isaiah Robert Peters Samulack was born four weeks early on Father’s Day, June 19 2016. He came fast. We barely made it to the hospital in time. Jodi, our wonderful doula and friend, drove us to the front door, although she went backward through the roundabout. The time stamp on her parking ticket was 9:10am. Aaron was born breech at 9:29am. Aaron did not let out a big cry we could not tell if he was breathing. It didn’t look like it because the breaths were so small, but he was. He had immediate skin-to-skin and delayed cord-clamping. We had 100 precious minutes with Aaron Isaiah Robert Peters Samulack. Our older son Gabriel met him, as did his Nana and Papa, plus via webcam his Grandma and Grandpa and aunts and uncles.
Aaron was beautiful. He did not appear to be in any distress, except when a camera flashed. I do not believe he experienced any pain. It was sad and it was hard. But, it was beautiful. Our nurse, Shelley was amazing as were all of the doctors and our doula and midwife. He was surrounded by love.
Finally, I want to talk about Aaron. He was amazing and beautiful and taught us a lot about love. He had a short life, but he was so loved. Aaron also had a personality. He loved egg and cheese breakfast sandwiches. Jalapeño poppers he either loved or hated. He loved dessert, especially ice cream. He got to go skiing, hiking, canoeing, and walking, but it made him tired. He did not like Jodi, the chiropractor-doula-friend adjusting me. Aaron not only knew his mommy’s voice, but that of his daddy and older brother Gabriel. Aaron’s favourite thing was music. Every Sunday he would dance throughout the church service. Every night that Rob would play piano he would dance.
Just over an hour after Aaron was born, we thought he had left us. Jodi turned on some music on her phone and he moved. He stayed with us another twenty minutes. If you asked, would we do it again, we would both say yes. That time that we got with Aaron was amazing and precious. All the battles we fought were worth it. It would have been logistically easier to end his pregnancy early, but that was not the decision for us. That decision may be different for other people, but we feel that we could make no other decision. We are now attending a group counselling session at Roger’s House for families who have lost a baby prior to or after birth. Our families, friends and co-workers have donated over $4500 to Roger’s House in memory of Aaron. I will forever cherish the time we had with our little boy.
“There is no footprint too small that it cannot leave an imprint on this world.”