Having had two straight-forward pregnancies, I was unprepared for a 20-week scan on our third to show up some abnormalities. The baby was measuring small, below the fifth centile and was reported to have an echogenic bowel. We agreed to have blood tests and I received a phone call a week later to say the NIPT (Non-invasive prenatal testing) had given my baby a 95% chance of having Edwards’ syndrome.
I didn’t know what this was and had to ask for more information. It was explained to me that it meant my baby had an extra chromosome and was unlikely to live. It was utterly devastating news and I burst into tears as I phoned my husband at work to give him the news.
The following scan we had was the lowest moment of my life up until that point. The consultant told us the baby was ‘incompatible with life’: the chest was too small for the lungs to develop and he or she was either going to die in the womb or shortly after birth. I felt completely overwhelmed as the future we’d envisioned crumbled before us and I shut down emotionally as we were being told we would have to decide when and how to deliver and what interventions to offer the baby after birth.
We had made it clear we wouldn’t consider termination because of our Christian faith and were told we could change our minds at any point up to birth. All I wanted was for my baby to live. I felt desperate and wept in prayer one night, expressing my desperation for this baby to live.
I found great comfort through the SOFT UK community as I joined Zoom calls with other expectant parents who were going through the same thing. It was incredibly helpful to not have to explain myself as everyone understood from their own experience. I was also so reassured to learn of living children with full or mosaic versions of the genetic condition and so I clung to the hope my baby might not die before we got to meet them alive.
It was exhausting telling our friends and family, although everyone was very supportive. I coped by switching off emotionally when with others then diving into researching online alone, when I couldn’t hold the emotions in any longer.
We explained to our children that the baby in Mummy’s tummy might not come home from the hospital but might go straight to live with Jesus in heaven. They were too young to truly understand what was going on, at four and two years of age.
Our parents and church community were there for us when we needed them, providing meals and childcare for appointments. They prayed with us for this baby to be one of the ones who survives. I don’t know how I would have handled it if we didn’t already have two children: I kept telling myself we already had a full family and they kept me so busy and occupied that I found I could only process it all as I lay awake overnight.
We saw another consultant who didn’t seem as convinced that our baby had the full version of Edwards’ (or Trisomy 18). She told us the baby just looked small to her and so we sought a third opinion from an expert in Fetal Medicine. We hadn’t had an amniocentesis because I was so desirous for this baby to live, I didn’t want to take any risks. I also hadn’t wanted to find out the gender because I had wanted our last to be a surprise. Now I didn’t want to know because I didn’t want them to feel even more real and to know my children were going to lose a brother or a sister.
The expert we saw was adamant this baby was not going to live. He showed us a heart condition called pulmonary stenosis on the scan and a cleft palate. He reassured us the hormones and enzymes would never work properly so even without the structural defects, the baby was not going to live.
Our hope was crushed once again. This baby felt so precious and loved and wanted by us, but was treated with little respect by the medical world.
We called our local hospice and received the most wonderful, compassionate and empathetic welcome. I felt wrapped in a comforting, warm blanket as I heard about all they offered: family suites, cold cots, mementoes of hands and feet, 24-hour nursing care, the ability of family to visit outdoors (there were no visitors in hospital due to Covid protocols) and counselling. They wrote us a detailed plan of care for the baby and we visited with our children, who loved playing in the soft play room and with the outdoor toys.
As the delivery date grew closer, I felt very down but also hope stirred every time I felt the baby move. We met with the hospital staff to plan the delivery and decided on an elective C-section at 38 weeks, hoping that’d give the best chance of survival.
After regular CTGs at the hospital, it was clear the baby’s heart rate kept dropping. We ended up with an emergency C-section at 37 weeks, late on a Friday night, as our church community prayed over Zoom.
Our daughter, Hope, came out pink, breathing by herself and screaming at the top of her lungs. She had no heart murmur and no cleft palate but was tiny, at under 4lbs. We wept and wept.
Tests revealed no presence of the genetic condition in her blood and a geneticist suggested the placenta had had the extra chromosome and not her. She had no medical issues at all and we joyfully took her home.
We don’t know if God healed her or if it was positive bias, that once we had the diagnosis, doctors saw what they expected to see.
We do know we are immensely grateful to see her grow up.
Beth Atherton
Beth has published a book ‘Carrying Hope’ about her experience (see Resources & Support section)
