We took it for granted that we had made it to the 12-week mark during our pregnancy. Everyone says that everything will be ok and risks are reduced once you get to 12 weeks. I was beginning to show and started telling everyone around me the good news. A few more months passed, and my partner and I were excited to go along to our 20-week scan to find out whether it was a boy or a girl and confirm dates!
The scan was all going well until the very last measurements of the heart and lungs. It was then that our world collapsed. The sonographer said she could see fluid around the heart and in the abdomen. She said, “I’ve never seen this before”, which filled myself and my partner with utter dread. She quickly disappeared and came back saying she had booked us in to see ‘fetal medicine’ in two days’ time. We had never heard of this department and were left for 48 hours without a clue as to what was wrong.
They felt like the longest two days of my life. I have an older son so had to keep things “normal”, but things were anything but. I went off sick from work with worry.
Have hope, stay strong. It’s not all about what the medics and science is telling you.
At the appointment the obstetrician told us our little man had a right sided CCAM (cysts on the lung), that he was showing signs of heart failure and that we should consider terminating by 24 weeks. Only one in every 11,000 (approximately) babies has this condition. It was the worst few weeks of our lives. We attended weekly scans to check whether the condition was stabilising or worsening. Everything inside my partner was telling him to continue with the pregnancy. I wasn’t sure. I had to carry this baby and didn’t want to give birth to a stillborn. The tension was unbearable. Life was chaotic due to lockdown and my elder son went away to stay with grandparents as I was so fragile. I withdrew from all friends and cut myself off from social contact. I spent hours and hours googling and researching, desperate for hope or for a chance of a second opinion.
There was very little support for babies with this condition and I felt very alone. My partner and I decided to continue with the pregnancy but dealt with it very differently for many weeks. It is all still a blur now as I write.
Weeks and months passed and our little one continued to grow despite such a negative outlook. We were sent to a specialist hospital with a NICU that carried out surgery on babies born with cysts on the lung. He would have to have surgery and be ventilated if he wasn’t breathing once born. The overload of information was very intense, and, coming from a medical background, I found it all very overwhelming. My partner was so positive, but I wouldn’t allow myself to believe that I might hold my little boy.
I was induced and whisked down to give birth near my due date. He arrived exactly on it! We spent a month in NICU where he had surgery to remove the cysts. It all went well, and despite such a poor prognosis, he was discharged from the service. He breastfed so well and came home with us to meet his older brother and start his life with us.
This was almost one year ago, and I wanted to write my story; to anyone who has a baby with a CCAM or any other condition diagnosed antenatally… you are not alone. Have hope, stay strong. It’s not all about what the medics and science is telling you. Follow your instincts and reach out for support, whether it be the wonderful people at ARC, or friends and family. You are not alone.