“No one really tells you about full-term babies being born so poorly or needing the NICU to save their lives” - Amy’s story

I had gone into the hospital at 38 weeks and three days with reduced movements, this being my fourth episode in about six weeks. It was a Friday morning and I was hooked up to all the monitors, which showed that our little girl was moving and had a strong heartbeat.

However, because it was my fourth episode of reduced movement, they wanted to induce me then. A few days had passed and I was struggling to dilate, even after many pessaries and a hormonal drip. At this point, I was getting really disheartened and wondered what was wrong with me.

At 11 pm on Monday, they decided to perform an emergency c-section. They opened me up and became clear to them within five minutes that my baby was impacted in my pelvis, which was a neonatal emergency.

While trying to get her out, my placenta started to come away in chunks and abrupt. An inverted T incision was performed along with a doctor pushing up through my vagina to get her out and she was pulled out breech. Our daughter was finally born at 00:55 am, an hour and a half later.

It took the paediatric doctors 22 minutes to resuscitate her, and they failed to intubate her three times. Ava was born with APGAR scores of one, three then five. Within an hour she was transferred to a specialist hospital for intensive brain cooling and other treatment. My partner followed behind the ambulance.

Within minutes of Ava being born, I had a major haemorrhage, from my pelvis and uterus. Then about 15 minutes later, I had another major haemorrhage and lost 4.8 litres of blood. I was given six units of blood and they inserted two drains and a Bakari balloon to help.

Finally, after six hours of being in theatre, I was being wheeled into recovery, with no baby. I didn’t even get to meet her before she was transferred. This had to be the worst time of my life - no one really tells you about full-term babies being born so poorly or needing the NICU to save their lives.

My blood then came back positive for sepsis, so required a further three units of blood. I didn’t end up meeting my baby girl until she was six days old, when I finally got transferred to the hospital she was at.

Ava spent a further 21 days in NICU, having treatment, tests for epilepsy, MRl's, cranial ultrasounds and CT scans. She was then diagnosed with Grade Two Hypoxic-ischemic Encephalopathy (HIE).

Ava was placed on a cooling mat at one hour of age and was then transferred to Addenbrookes Hospital to start the full therapeutic cooling process which lasts 72 hours - she was wrapped in bubble wrap and her body temperature was lowered to protect her brain from any further damage.

At four hours old Ava suffered a seizure that was picked up on the monitoring along with some physical jerks, lip-smacking and laboured breathing. She had to have a central line fitted into her belly button, along with a cannula in her hand and an NG tube for feeds. Ava extubated herself at around five hours old, so was then given nasal prongs for oxygen, but she didn’t tolerate this very well.

When my partner arrived at the hospital, he was given a NICU pack and in there was a booklet all about Bliss - this was a huge help to us and we referred back to this throughout our NICU stay. Knowing there was someone there to support us was great. Being in NICU can become very isolating, lonely and it’s hard to talk to other people who haven’t been through anything similar.

The NICU team were amazing and ensured we were involved in all of Ava’s care. We were taught how to feed Ava via her NG tube and they always kept us updated on any medication changes or treatments. They helped us to give Ava a bath and put her first outfit on.

An investigation has been completed by the Healthcare Safety Investigation Branch (HSIB) team which took ten months for them to find seven findings of medical negligence from the start of my induction until Ava was transferred to Addenbrookes.

My recovery was long, draining and really difficult - I don’t think I was physically better and mentally well until Ava was around six months old, I still struggle nearly three years on, I have just learnt to deal and process it in a different way.

I suffered from really bad anaemia and required ongoing treatment for this, alongside getting several infections in my womb which required three lots of antibiotics.

I wasn’t able to bond properly with Ava, I felt a lot of resentment toward her at the start - this sounds awful to say, but it’s true. I wanted to breastfeed but wasn’t able to do it. The NICU staff suggested expressing as at least she was still getting my milk, but my milk supply wasn’t great - we think this was down to the blood loss.

I have been undergoing EMDR therapy for 14 months and have severe anxiety and PTSD. I suffer from flashbacks, nightmares, panic attacks and the most intrusive thoughts on the odd occasion. I still take Sertraline now to help me through those tough days.

We have just had baby number two which has definitely helped with the healing of the trauma. However, we did end up in NICU again, with another full-term baby. Luckily we had prepared ourselves for this as we knew there was going to be a slight chance he would require support with his breathing. Being NICU pros and going back to what felt like a second home, made this time round a little less daunting.

Thank you for reading my story!