'All we could do was make the most of the time we had left' - Donna's story

Donna's Story Hero

Donna's daughter was born at 22 weeks and sadly lost her battle with kidney failure.

No one ever thinks having a baby in a neonatal intensive care unit (NICU) will happen to them. It’s an emotional rollercoaster, and the journey doesn’t end when your child finally gets to go home. We experienced this rollercoaster twice. However, we only got to take one baby home.

Christmas Eve 2012. I was in hospital, 22 weeks pregnant, due to a sudden, heavy bleed. I went for an ultrasound check-up. We got an early Christmas present. “Is it a boy?” my partner asked. “I think you’re having a girl”, the sonographer said. We were over the moon.

The joy didn’t last long. I was discharged on Christmas Day but rushed back in on 27 December. The next day I delivered our daughter. She weighed just 1lb and 4oz. I haemorrhaged and almost completely blacked out. Once I was fit enough my partner pushed me, heartbroken, up to NICU in a wheelchair to meet our baby girl. I remember sitting in that wheelchair, next to her incubator, crying. Why was our tiny, precious baby girl no longer safe in mummy’s tummy? My body had failed her and no one had answers for why this had happened.

We spent the next days by her side. I kept talking to my partner about how I’d bought her some tiny baby-sized vests, for when she finally went up to the Special Care room. I know the nurses heard me. I know they knew she was never going to make it. That’s just something you don’t even think about. You have to try your best to stay positive, otherwise it will break you and you won’t be able to pick yourself back up.

We held it together until she was 18 days old. I’d been discharged the day before. We travelled from home, walking through the double doors and into the baby ICU room. Something was different. We didn’t make it to our baby’s incubator. We were greeted by the doctor and a nurse. “The doctor would like to speak to you”, she said. I felt my heart sink. Our daughter had been poorly, her body had filled out with fluid. Her kidneys were failing, but they’d started her on new medication, so we’d been hopeful.

Most of what was said that day is now a blur, except three heart-breaking words. In the most compassionate way possible, the doctor informed us “she’s actually dying”. I begged, pleaded, did everything I could to keep her with us. I asked the doctor to increase her medication. It worked, for an hour or so. All we could do was make the most of the time we had left with her. I stood next to her incubator and just cried, begging her not to leave us.

They said she wouldn’t be able to cry, but I still swear I saw a tiny tear come from the corner of her eye and fall down her cheek. The next day she was still fighting, but her heart rate started to drop. I spoke to my partner. “I think it’s time”. He called the doctor. We couldn’t let her suffer any more. At 6.25pm on Wednesday 16 January 2013 she gained her angel wings.

That day, we’d had a meeting with a lovely Bliss champion called Shirley. Shirley had gone through a very similar experience and gave us a great deal of comfort before we’d made that hardest of decisions. I couldn’t have done it without her – thank you Shirley for spending time with us and being so supportive.

We met with Shirley again in August 2013, again not in the greatest of circumstances. I’d just given birth to our second daughter, Luciana. She was born at 23 weeks and 5 days, one week more than her sister, and weighed 1lb 5.5oz.

I couldn’t believe this was all happening again. Why us? Why our babies? I blamed myself, until the doctor explained that almost all mothers of NICU babies blame themselves. At least I’d been given a diagnosis this time – I had a weak, or ‘incompetent’ cervix.

At just a couple of days old, Luciana was extubated and taken off the ventilator. They brought in a CPAP machine for her, and the tiniest hat and nose mask I’ve ever seen. She didn’t manage, her lungs were too fragile. But she didn’t go by the book. She had so much strength and determination.

Everything seemed different this time round - it all felt more positive and it was such a relief. I’d thought the difficulties her sister had faced were part of prematurity. Luciana made me realise her sister had been very sick.

Luciana’s biggest battle was with her breathing. The doctor was reluctant to start a course of steroids as she’d just been diagnosed with a PDA (Patent Ductus Arteriosus). The options were either medication or going to the Royal Hospital for Sick Children in Glasgow for surgery. The doctor explained the medication used to close a PDA could cause necrotising enterocolitis (NEC), which we’d watched our first child battle. It was truly horrific so we chose surgery.

When Luciana was finally transferred, the size of her PDA was checked. In actual fact, she’d managed to close it on her own!

Finally, with steroids and caffeine, she was successfully put on CPAP at eight weeks old. We were allowed our first kangaroo cuddles. Waiting had been extremely difficult, but having my little fighter snuggled into my chest was the best feeling in the world, especially after all the heartache just nine months earlier.

Luciana sailed through the remainder of her time in NICU and was discharged at four months, weighing 6lbs 9oz. She had Chronic Lung Disease and needed home oxygen – being able to walk through those double doors, carrying a baby in a car seat is so terrifying yet amazing.

At 13 months old, Luciana was taken off oxygen completely. She had a few more hospital admissions, ending up with respiratory cyncytial virus (RSV) at one point. It also took her a while to learn to roll over, sit up and walk on her own. But she’d made it.

She is now almost three and catching up well. Even the slight delay with her speech is improving. In June she won her nursery sports day race!

I’d like to thank Bliss for their support during both of our NICU journeys, and also the neonatal staff at Crosshouse Hospital, Kilmarnock for everything they did.

We couldn’t be more proud, of both our girls. Of our little angel for how hard she fought, and of our survivor for kicking prematurity’s backside. She is our little miracle.

Baby Loss Awareness Week (9 to 16 October) is a time when bereaved parents, family members and friends can commemorate the all-too-brief lives of their babies, knowing that thousands of other families elsewhere in the world will be doing the same.

If you have been affected by any of the issues mentioned in this post and would like support, you can view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk