“Babies aren’t designed to survive outside the mother’s body at 23 weeks”

Everything had been going well. My wife Nicola had had a 20-week scan, and everything looked healthy. And then one night in late January, I got an email at work from Nicola, asking if I had left for home yet. I knew something was wrong. Nicola had been bleeding a little, so we went to Cardiff University Hospital.

We expected to be reassured and sent home. Instead, they found that Nicola was two centimetres dilated. She was 23 weeks and one day into pregnancy.

Doctors told us that babies aren’t designed to survive outside the mother’s body this early. Our daughter didn’t stand a chance.

Nicola and David, parents to 23-weeker Edie
Nicola and David were only 23 weeks into their pregnancy when Nicola went into labour at Cardiff University Hospital.

We hoped that they could insert a stitch into Nicola’s cervix, but there was a risk of infection to mother and baby. We hoped with bed rest the baby would arrive a few weeks later. But at 23 weeks and 4 days’ gestation, Nicola went into labour and Edie was born, 17 weeks early.

The doctor thought she was dead at birth – but she was just about alive. She was immediately taken away from us to be intubated. They stabilised her and took her to intensive care in a travel incubator.

For 2 hours, we didn’t know what was happening. When Edie was stable enough for us to visit, we realised how dire the situation was. She was tiny, the smallest thing I’d ever seen. 1lb 4 oz. 580 grams. Her skin was so fragile she had to be kept in extremely high humidity.

We spoke to a consultant who told us that Edie’s odds of survival were not good. Babies born at 23 weeks have a 20% chance of survival. 50% of them will have moderate to severe disability if they survive.

Micro preemies like Edie tend to have a “honeymoon period” of 24-48 hours where they seem to be doing well but then go downhill very quickly. We were expecting her to dip after a day, but she had a very good first week. They even took her off the ventilator to try CPAP (continuous positive airway pressure) and let her try to breathe, with assistance, by herself. The problem was that she was too small for the equipment. The mask was too big, and nurses had to hold it onto her face to avoid letting air escape from the mask.

In Edie’s second week of life she developed an infection in her lungs and became very unwell. Her reliance on the ventilator increased day-by-day. We discussed with doctors the possibility of turning off life support if her lungs didn’t improve. Luckily, the doctors were able to intervene with steroids to help her lungs recover, and this made a big difference.

Picture of Edie wearing a birthday hat on her due date, aged 116 days
Edie celebrated her due date at 116 days old.

Over the next few months, Edie got bigger and stronger. She had many complications as you might expect. She had blood transfusions – there was also a grade 2 bleed in her brain. She had an eye operation at 3 months to deal with damaged blood vessels behind her eyes. Left untreated, she could have gone blind.

During month 4, we were finally able to take Edie off oxygen for the first time, give her a bath, and hold her more often – it was a big deal. We finally came home with her on 22 May, a week before her due date.

Edie is doing brilliantly now. She weighs just over 8 kgs, she’s crawling, she’s hitting all her milestones.

The doctors aren’t sure why Edie was born so early. Nicola tested negative for an infection back at the hospital, but now they think it might have been one after all. They ruled out an incompetent cervix.

Picture of 23-weeker Edie, now a toddler, smiling at the camera.
Despite a difficult start, 23-weeker Edie is now doing well.

Being told that our daughter was probably not going to survive was very distressing and frustrating because Edie was perfectly healthy inside the womb. Her heartbeat was strong, she was doing well. Yet we were told that the moment she came out, she would probably die. It seemed so unfair.

When we heard about Borne through Jason Fox, it resonated with us. Even though we had a happy ending, delivering at 23 weeks was a horrible experience. The research that Borne is doing can help other parents from being put in that situation.

After the 20-week scan, we assumed we would have a normal pregnancy. We assumed everything would be fine and it wasn’t. With more medical research and support, premature babies can survive and thrive. Edie is proof of that.

Read about how David and his wife Nicola coped with life in the NICU in part 2.

This blog is based on a phone conversation with David. Edits were made to shorten the article.