real life

'I became a mum in October. Nine days later, I lost my baby daughter.'

I became a new mother to a baby girl on 30th October, 2018. Sadly, Scarlett passed away nine days later.

You hear so many heartbreaking stories from mothers and also fathers but I never thought this would happen to me until it did.

The hurt of losing our baby Scarlett is still raw. My partner and I had a very emotional pregnancy journey where it was discovered our baby would have a rare heart defect called truncus arteriosus, with ventricular septal defect. Later, we were told she would have an atrium septal defect as well.

At 32 weeks, we discovered she would have a digestive blockage in the duodenum called duodenal artresia. She would require two separate surgeries to repair her heart and her digestive blockage when she was born.

I had also suffered polyhydramnios as a result of her digestive condition, and required an amnio reduction to prevent premature labour at 34 weeks. The morning after my second amnio reduction at 36 weeks, my waters broke.

My partner and I rushed to the hospital at 4am and after hours of waiting for labour to come and trying to be induced, Scarlett’s heart rate dropped on two occasions. I had an emergency c-section and she was born breathing.

She was sent to the Neonatal Intensive Care Unit three hours after delivery. Once I was discharged, I stayed in the post natal ward. I spent the first week of her life stressed and crying daily.

My partner worked to keep the income flowing whilst I was in hospital with Scarlett. She had been moved to Pediatric Intensive Care Unit on the first day I had arrived where she was on a CPAP machine to help with breathing. Two days later she was sent to another ward, and they wanted to see if she could breathe on her own. After an emergency call for her room at 3am, her breathing became more rapid and she was sent back to PICU to be put back on the CPAP to help her breathing which stabilized her.

Baby Scarlett. Image supplied.
Baby Scarlett. Image supplied.

Another two days past and the doctors wanted to send her for her heart surgery at seven days old. We waited six hours until we received a call from the surgeon that the surgery went well, however, upon her return we received another call to say that something was wrong. During the routine check on Scarlett, the doctor was concerned that her pupil on her right eye wasn’t dilating and was smaller than the left side. She was sent for an emergency CT scan five hours after her surgery.

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The results found she had significant bleeding on the right side of the brain.

This was a rare complication from the surgery, and one that had not been seen often by the children’s hospital. We consented to have her sent for emergency neuro surgery to drain the blood off the brain. We were told the worst, and were warned prior to her surgery that she would suffer severe brain damage due to the complication and would be severely disabled, if she came through.

The surgery was complete in two hours, but Scarlett was unstable during the operation and returned yet again to PICU an hour later with low blood pressure. We were warned that if the medicine she was on didn't work to stabilize her blood pressure, there was not much else they could do.

Thankfully that morning her blood pressure did stabilize, and for the next two days her heart medicine was being weaned off. Scarlett was then sent for another CT scan to examine the outcome from the emergency surgery two days prior. The results indicated severe brain damage, and we were advised that we needed to decide to stop treatment as there was not much else the doctors could do for her.

We made the painful decision to stop her treatment the next day. We felt we couldn’t let her live on in the condition she was in. It’s no life for a newborn baby.

Sarah with her daughter Scarlett. Image supplied.

We had to go through this ordeal, as well as having to plan a funeral for the burial of our daughter. I wanted so badly to help Scarlett and make her better, and I wished and prayed that she would be our little miracle baby that would make it through.

Being born a month early, Scarlett wasn't ready for the major surgery she went through. She was unable to eat to gain strength and weight because of her stomach condition, and it was heartbreaking to listen to her cries of hunger as I sat next to her, trying to express breast milk for her.

It’s devastating losing a baby, and I now have the pain of saying goodbye rather than taking her home and watching her grow. I never got the chance to feed her, to change her nappy and all the other comforts that come with motherhood. I only hold on to the thoughts of the time I got to cuddle her with all her tubes attached, and the moments I got to soothe her cries, as much as it pained me to see her upset.

I can only hold onto the small positives of the experience of bringing her into this world.

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