‘I obsessively read parents stories to reassure myself that a good outcome was possible’ - Sarah’s story

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For the first 20 weeks of our pregnancy everything was going smoothly. It was my first pregnancy so I didn't know if anything was not normal. I didn't have much of a bump but I didn't worry too much about that. At our 20 week scan we found out we were having a boy, and the only other thing mentioned was his femurs looked a bit short, so they booked us in again for 24 weeks just to check on this.

At the 24 week scan they said his legs were still short and sent me to Wrexham Hospital which was the nearest hospital with a neonatal department who kept me in overnight for monitoring hourly. Here they dropped the shocking news that the baby had severely restricted growth (less than the 1st centile) and restricted blood flow through both uterine arteries.

Despite having a low result on my screening for genetic abnormalities they recommended an amniocentesis to rule out any genetic issues and sent me to Liverpool Women's hospital to be monitored due to them being able to care for babies 24weeks+. It was at this point that they told us very clearly that this pregnancy was not going to term and that his survival depended on how long he was able to stay growing inside me. The initial aim was 28 weeks and I was immediately signed off sick from work and told to rest as much as possible and avoid stress. I also had to go back into Liverpool twice a week for Doppler scans to monitor the blood flow to the placenta.

The amniocentesis came back negative which was a huge relief, and the diagnosis was that my placenta had not formed and connected to my uterus correctly causing growth restriction. For the next few weeks, we got into a routine of going in for the scans and me waiting anxiously for any kicks I felt which were few and far between because of the baby’s size.

Then the week before Christmas the doctors at Liverpool decided the best move during the holidays was to have me admitted as an inpatient so I could be monitored more closely and if it got to the point where baby needed to come out, I'd be in the best place. I had twice daily CTG tests and twice weekly Doppler scans to ensure baby was doing okay.

As long as the scans were fine, I was allowed to leave the hospital if I wished so I was able to go home to my parents for Christmas under a strict curfew of 8pm for my evening CTG. Then on New Year's Eve my husband and I went out for dinner in Liverpool and when I came back the baby’s heart rate was dropping and my blood pressure was very high. The doctors said I likely had pre-eclampsia and would be delivering in the next week. The next morning the consultant decided that was the day for the delivery, so Reuben was born at 22:46 on New Year’s Day by C-section. This was 28 weeks + 1 and he weighed a tiny 1lb 11oz. He came out breathing on his own but was put on CPAP before leaving the theatre. I was very grateful to be able to have a quick cuddle before he was taken to the NICU as I knew this was not always possible.

We spent 10 days in NICU in Liverpool while Reuben was treated with blood transfusions and for jaundice. Then we moved to Glan Clwyd hospital HDU for 8 weeks where he had more blood transfusions (3 in total) and the team worked to wean him down off his oxygen requirement. Once he was on low flow oxygen, we moved to Wrexham hospital which was low dependency SCBU rather than NICU or HDU where we stayed for the remaining 4 weeks of our journey. Reuben eventually came home on 0.2 low flow oxygen on 21st March which was 3 days before his due date. He currently doesn't need any further intervention besides the oxygen and is doing well at home. He was reluctant to bottle feed and for a while we thought he'd come home on a NG tube but in his last week on SCBU he pulled the tube out and didn't need it again! We have already weaned him down to 0.08 oxygen so we are hopeful he will be off this soon.

When I was in hospital, I obsessively read parents stories to reassure myself that a good outcome was possible so I was determined to share my own when I could. I am also taking part in the 62 miles in May challenge for Bliss. My main piece of advice for parents going through this is you will get through this and it's okay to ask for help and take breaks as it can be a lonely and stressful time. If you need to take a day when you don't go into the unit for whatever reason the staff won't judge you and your baby is having the best care.