Sophia’s Story

By Sophia's Mum
Monday 21 February 2022

Sophia was born June 30, 2020. She was born with Trisomy 21 and a vascular malformation on her neck and arm and a large hole in her heart.

At seven days old, Sophia was transferred to Southampton hospital for further investigation on the vascular malformation.

She was then transferred to Great Ormond Street Hospital from Southampton for a biopsy on her neck.

Whilst in Great Ormond Street she had two blood transfusions because of the malformation. Her biopsy came back non-cancerous and allowed Sophia to be transferred to Southampton Hospital. She will have to return to GOSH soon as this diagnosis will not ever get better.

Sophia was then transferred to Southampton were she had her hole in the heart repaired at six weeks old.

She spent a further two months in Southampton hospital before she came home.

Sophia then came home for a few weeks then was admitted to Robin Ward at the General Hospital with respiratory problems. Sophia spent her first Christmas in Robin Ward.  In January 2021, she was sent back to Southampton Hospital where they discovered she was suffering from sleep apnoea.

Sophia returned back home with a SATS machine and is on a CPAP machine at night.

In December 2021 Sophia went to Southampton to have a mini button inserted to enable the nasogastric tube to be removed. Unfortunately, her surgery was cancelled due to her being poorly. Sophia was able to have her surgery in January 2022.

If it wasn’t for Family Nursing and Home pursuing another appointment tirelessly, we wouldn’t have had her surgery done so quickly.

Family Nursing & Home Care have been invaluable to us to allow Sophia to stay at home with us and her six siblings. They are only a phone call away and we are delighted to see them each week to check on Sophia.

They have been a god send caring for Sophia as she heals from the surgery and if we didn’t have their care, we would be visiting the hospital alot for Sophia! Family nursing are a much needed charity for families and their sick babies/children. We certainly could not do without them!

We really have a great relationship with them all and they really take the stress off having a sick baby at home. Nothing is ever too much trouble for them! Thank you from the bottom of our hearts; we cannot thank Family Nursing & Home Care enough for what they do.

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