Sophia
Sophia was born on 10/05/2020 and until the day she was born we had no idea she had any medical complications. A few hours after she was born she was taken to special care because the midwife had suspected something wasn’t quite right. From here on in everything spiralled. She had a heart scan at Airedale hospital and was transported to Leeds General Infirmary urgently and was placed on a ventilator while they carried out investigations. After several investigations it was uncertain if there was anything that could be done as Sophia’s heart was very complicated. She was christened at 2 days old in hospital.
The next day we heard that there was some hope that they would be able to operate and at 4 days old she went in for 13 hour open heart surgery. From here there was many complications and Sophia remained on a ventilator for 8 weeks after getting chylothorax which filled her lungs. 2 weeks after Sophia’s open heart surgery I was taken to a room (on my own due to Covid so I had to deal with everything on my own) and informed that they had noticed she had a missing thymus in surgery which prompted them to check for DIGeorge syndrome and the tests came back confirming that she did. At this point I had never heard of the syndrome and found myself on Google which brought up so many horror stories I was left heartbroken again and terrified (I have since learnt not to trust the information found on Google).
After spending the first 3 months of her life in hospital we finally came home and Sophia met her big brother officially for the first time. Sophia came home with an NJ feeding tube due to severe reflux and aspiration. Her face was so sore due to an allergy she has to any tapes. She ended up having surgery in October 2020 to have a GJ tube placed (this has been so much better for her). She is half fed in to her stomach and half fed in to her intestines currently and we are working to reduce J feeds. We are also working on oral feed however, not having a great deal of success as she is not interested and it’s unclear if her swallow is completely safe.
Since coming home from hospital in August 2020 it has been a whirlwind of appointments. Sophia has many medical specialists involved with her care which is a great help but also means we spend a lot of time at appointments which is really tough. In April 2021 Sophia had immunology testing which we are still awaiting the results for. She seems to have had a lot of illnesses over the last 5 months which take a long time to overcome and often result in antibiotics so it will be interesting to learn how her immune system is functioning.
Sophia is doing really well all in all. She turns 1 in a few days and I just can’t believe it. She is sitting, rolling, clapping, waving, she plays with her toys and interacts well with others. She has recently started seeing a physiotherapist to try to help with her body and muscle strength and get her crawling. Although she is behind with a few milestones I don’t think at this stage it’s particularly concerning due to the amount of time she was refined to a hospital bed.
Sophia makes noises but isn’t yet babbling as such which could potentially be a delay. She has recently been referred to a paediatrician to bring all of her care together and make sure any delays get the care and attention they require as soon as possible.
Sophia has also recently failed a hearing test however, at this stage it is thought it may be down to fluid due to the bad cold she had just got over therefore she will have further tests in 3 months.
Myself and Sophia’s dad have recently had genetic blood tests to see if either of us have the syndrome. We are awaiting these results.
Going forward we know Sophia will need further heart surgery in the near future. I will do everything in my power for Sophia to thrive and I can’t wait for her to carry on surprising me with her amazing personality every day!
Sophia lives at home with Mummy (Charlotte), Daddy (Russell), Big Brother (Joshua). She adores her big brother and he adores her.
Thank you for listening to Sophia’s journey. I know I have missed a lot out but I have tried to cover as much as possible. I have attached some photos.
Charlotte x
