I am a 33 year old South African who was also faced with the heartbreak of a devastating prenatal diagnosis. My husband and I have been married for seven years. Our journey has been tough. We had our first miscarriage in 2010, followed shortly thereafter by another. In 2013 we lost our twins at 10 weeks.
During this time we spent hours and lots of money trying to figure out what went wrong. We didn’t get firm answers, only suggested medications, etc. When we found out we were expecting again in July 2014 we were cautiously optimistic, but after every successful scan hope started growing.
We shared the news with everyone at 14 weeks and began planning our lives with our precious little one. Our doctor suggested that we go for a specialist scan, just to be sure all was fine and to assist them to gather data confirming that the regime of clexan injections and intralipid infusions can be successful. I was a little irritated at the time; the scan was expensive and the specialist was an hour away. But I also saw it as another opportunity to take glimpse at our little girl.
At the end of last October, 21 weeks into the pregnancy, we received heartbreaking news – our little girl was very sick. She was diagnosed with Hypoplastic Left Heart Syndrome. Her form of this was very severe. We consulted a bunch of specialists in the hope that there was something that they could do, but unfortunately her condition was as serious as HLHS gets. Both left ventricles were severely under developed, as well as the aorta. Because of this, the necessary surgeries to save an infant with HLHS were unlikely to work in her case.
The best pediatric cardiac surgeon in Africa told us what our options were. We were ready for him, we researched surgical protocols and future prognosis. This was complex, but we read all about the three-stage surgical approach to reconstructing a heart with HLHS. We’d read the success stories. He spent an agonizing hour and a half doing calculations, scans and a full echo cardiogram while we watched our little one on the screen. He walked us to his office, sat down and explained to us bravely that they are just not that good yet. We had two choices, carry her to term, deliver her at his unit and put her onto life support immediately and let her pass away. She would be in respiratory distress and her heart will eventually stop beating. The alternative to deliver her peacefully and say goodbye.
It was the toughest decision of our lives. We prayed, begged for answers, got angry, shouted and screamed. The doctors were all emphatic that this wasn’t a decision for us, we had to choose what was best and most painless for her.
At this point few people commented to us with their “moral” argument against ending the pregnancy. But they weren’t her mom and dad who had to do what was right for her.
On the 4th of November I was induced, went through labor and delivered her on the 5th of November. She was born “sleeping.”
We held our Nina. She was a beautiful little girl, perfect in every way. She had my hands and feet and her dad’s good looks. She smelled heavenly and was ours, so wanted and so incredibly loved. We left the maternity ward empty and forever changed.
There are blessings in this journey. 1. We were blessed to have access to high-quality medical care and diagnostics. 2. I have gained compassion. I cant put it in words, but I have a softer approach to life. 3. I have courage to try again. I’m not ready just yet, but there will come a day, soon. It is in me. 4. Our lives are filled with wonderful supportive friends and family that listen and that I can be super honest with. 5. People open up to me freely about their own pain and for a moment I can put my compassion to use.