My pregnancy with our son Alfie came as a bit of surprise. A planned surprise, but having endometriosis and poly-cystic ovarian syndrome we expected it to take longer than a month. When we found out, I was only 1-2 weeks pregnant. The first 6 weeks flew by in a breeze with minimal symptoms other than hunger and exhaustion. The weekend before our first ultrasound I got really sick. Extreme stomach cramping, vomiting, diarrhea. We called an ambulance and they said "don't stop the birth" despite repeatedly saying I'm not bleeding. We went for the emergency clinic who sent us for an urgent ultrasound the next day, there were concerns I was experiencing an ectopic pregnancy.
Thankfully our baby was healthy, there was a good strong heartbeat and we had what I was told was a bad stomach bug. Unfortunately I never got better and multiple doctors appointments and family advice brushed it off as "just morning sickness".
October 31st 2019, mine and my husband's favourite day of the year, we planned our 13 week ultrasound because nothing screams scary like commitment. Our sonographer was running an hour late, I was sick and kept having to go to the bathroom to nearly vomit, when we finally got in the sonographer was wonderful, cheerful and patient as I kept needing to get up and be sick. The scan was going well, if not for our sassy little man refusing to be in the right position to measure everything. They noticed the nuchal translucency in the back of his neck was thicker than average. We were told there was an increased risk of down syndrome but we wouldn't know more till we got all my blood test results back. 3 hours later I was admitted to hospital with hyperemesis. Not exactly the happy pregnancy announcement we were hoping to make.
A few days later my midwife called, we had a 1/35 chance of our baby having down syndrome and we were referred to maternal foetal medicine at Auckland Hospital. A few weeks later we made the trip to Auckland. Our fetal specialist was the loveliest woman and doctor you could ever ask for. She answered all our questions, was patient, explained the risks of an amniocentesis and asked us if we still wanted to continue. We chose to continue with the amniocentesis, during the ultrasound they noticed that there was a problem with our son's heart but he was too small for them to see clearly. It was also this scan they confirmed he was, in fact, a boy which I was beyond excited for.
We stopped at krispy kreme on the way home, which became a part of our Auckland Hospital trips and attempted to keep the happy secret we were having a boy while also processing that there was potentially a problem with his heart.
3 days later my midwife called, confirming again he was a boy and also confirming our sweet man didn't have down syndrome. My husband and I cried pure happiness. We thought we were out of the woods, that we just had to handle a heart condition. That's manageable.
2 weeks later our midwife called again out of the blue. She had the rest of our amniocentesis results. There was a duplication on chromosome 17. Our midwife had never heard of it, she said it was associated with physcial abnormalities, mental delays and learning disabilities. We would find out more at our next Auckland appointment.
We both broke down, we didn't know how to process this or what to do. All we could do is wait.
The following week our appointment got cancelled because there was nobody available to see us, we had to wait another week. This made our next appointment for December 16th 2019, my birthday. As you can imagine we were thrilled by this news.
December 16th comes, we go for our appointment, my doctor bless her heart says happy birthday as she leads us to an ultrasound room. I lay down on the table, the ultrasound began and we knew something was wrong. The doctor was silent, it was clear for everyone to see. One side of Alfies head was larger than the other. I asked what was happening, I asked what was wrong, I was met with silence. We were all trying to process what we were seeing.
When the ultrasound finished she led us to a big meeting room and went to get the doctors. I broke down. There was something wrong with my baby.
The room was then filled with doctors. Our fetal specialist, a geneticist, a pediatric cardiologist, a pediatric cardiology nurse, and my hospital appointed midwife. One by one, they all said their peace. First the pediatric cardiologist. One of the tubes in Alfies heart was too small and he had a hole in his heart. Alfie needed to be born at Auckland Hospital, he needed his first surgery at 2-5 days old to have a shunt put in his heart, his second surgery at 6-12 months old to have the hole in his heart closed, and then surgery every 2-3 years to have the small tube replaced because they used synthetic materials and it wouldn't grow with him. He would be born blue, he would be put straight into NICU at Starship Hospital. We needed to move to the Ronald McDonald House at Starship Hospital at 35 weeks, sooner if my growth scans were concerning and we would be there upwards of 9 months.
Alfie had fluid around the right side of his brain and missing connective fibers in his cerebellum. He was going to be moderately to severely disabled. They didn't know how much this would affect his recovery with his heart or what treatment would be needed.
Alfie's chromosomal abnormality was rare. There were less than 20 recorded cases worldwide. They didn't know how this would affect his recovery from his surgeries. But he was going to be moderately to severely disabled. Of the few recorded cases there was an 8 year old who could talk, someone in their 30s who lived in a assisted living facility.
The medical team were very honest with us. Alfie may not survive birth, he may not survive surgery, we may be advised to not continue treatment if its causing him more harm than good. We were told our options.
Continue with the pregnancy.
Termination for medical reasons.
At this point I was 20 - 21 weeks pregnant. We went to Dennys for dinner, we got krispy kreme and we went home defeated and in shock.
The next day we patiently told our families the news, the prognosis and our options. We were met with nothing but kindness, love and support.
We emailed the medical team back and forth for weeks, looking for alternate treatments, hope of any kind, something that would save our baby boy. But eventually we were told that it wouldn't get better from here, only worse.
We made our decision and decided we wouldn't tell anyone till after Christmas.
December 31st 2019 we told both of our families our decision. We decided not to continue with the pregnancy. Our son didn't deserve to be in pain or suffer. Our son deserved better. We told our midwife. We emailed the Auckland medical team.
January 6th 2020 we went to Auckland and Alfies heart was stopped.
January 9th 2020, after 27 hours of labor, our baby boy came into the world. Silent but perfect. He looked just like his dad, he had his dads ears too. Angel Casts came and took casts of his hands and feet. A volunteer photographer from Heartfelt came and took photos of us as a family. We took our baby boy home that afternoon, had a tangi for him and got him privately cremated on January 11th 2020.
We were terrified of telling anyone we made this decision. We thought if anyone knew we wouldn't get help or support. We thought options like Angel Casts and Heartfelt wouldn't be available to us because we made this decision. We didn't lose our baby like other families. We were mistaken. We have become more open about our decision, our sons diagnosis and prognosis.
There was no happy outcome for us, no right decision for us or our son. But we made the decision we did because our son deserved more than was being offered to him.