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Sarah and Sophia's story

16 December 2016

Sophia came into the world on 28 October 2015, four weeks before her due date. I had suffered for a few days with a terrible headache, and upon visiting my local maternity unit they discovered my blood pressure was dangerously high.

I was admitted after a trace showed Sophia’s heart rate kept dropping and they kept me in overnight, giving me steroid injections to prepare her tiny little lungs. The following morning the trace showed her heart was stopping for periods of time and I was taken to theatre straight away to have an emergency c-section. The doctor explained to me and Andy, my husband, that she may be a little small, around 6 lbs - so we were all totally surprised when she weighed just 4.5 lbs!

All appeared to be OK until we got to recovery and Sophia couldn’t sustain her own body temperature. The midwife tried for a few hours to feed her artificial sugars and we did lots of skin to skin with me, but a consultant decided in the early hours of the morning that she needed to be taken to NICU. It broke my heart having her taken from me, and nothing would prepare me for when I stepped through those doors of the Neonatal Intensive Care Unit (NICU). She was surrounded by wires on a heated cot, and it would be another 12 hours before I could hold her.  

It took seven long days to finally stabilise her blood sugars and treat the thrombosis she had developed in her leg due to the long plastic lines used to feed in the antibiotics she needed. Both my husband and I were exhausted and emotionally drained. I often broke down to the Bliss support volunteer on the unit, and she was such a comfort to us, providing positive thoughts and lending a shoulder to cry on. There were many people worse off than us in the blue room where Sophia was staying and we all appeared to share in each other’s raw emotions and grief for these tiny babies all fighting to survive. It was a rollercoaster ride of doctor’s rounds, pumping milk every two hours, going home to ensure our son was OK and running back to the hospital to make sure we were there for her ‘cares’ every three hours.

Then my son Harley, aged three at the time, finally got to meet his sister. That day will be imprinted on my mind forever. It wasn’t the way I’d wanted them to meet, but he was as happy as us that she was alive and on the way to making a full recovery.

The neonatal nurses who cared for Sophia all deserve medals for their hard work and dedication. I really did feel like I was leaving a piece of my heart with them every time I left the hospital and we’d become good friends with many of them by the time we could take Sophia home.

Sophia did finally come home after 11 days in the NICU weighing a tiny 4 lbs. She was on medication for the following eight months for a suspected adrenal insufficiency, but after countless tests we have just recently had the all clear and her medication has now stopped.

Today, Sophia is happy and healthy and looking forward to going to Disneyland with her Brother.

Thank you for taking the time to read my story. I hope it can be of comfort to other parents with a baby born too sick, too soon.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk

If you would like to find out more about volunteering opportunities with Bliss, please click here.

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