The story of Gracie
Gracie was born on 4th October 2020, her life and my life changed on October 26th 2020. She was taken into hospital on 25th October 2020 around 7pm with signs of a infection. She stayed at hospital over night having antibiotics every couple of hours during the night. The next morning on October 26th, Gracie was examined by a nurse and noticed a murmur when listening to her heart, her heart was examined moments later and found 2 holes in the heart, a large VSD and a small ASD she was given medication and got taken to Southampton hospital, they re examined Gracie and found 3 holes in her heart, they expected her to stay in for a couple of days and get the all clear to go home (during the first few days they introduced a feeding tube to Gracie). Gracie didn’t get the all clear to go home after a few days but, stayed at Southampton hospital for around 6 weeks while I stayed at Ronald mc Donald, she had a rough Journey full of highs and lows, until one day a doctor wanted to do a Down syndrome blood test on Gracie, the results came back as unconclusive, we then did more investigating and got the genetic team to come out and took more bloods, this was a 12 week process, after a couple of weeks of being at Southampton hospital we got transferred to our local hospital at whinchester, Gracie couldn’t keep anything down, and was sick with every feed and struggled too keep weight on and kept losing weight. It was a terrifying experience. After 2 weeks of been at our local hospital we had the all clear to go home. After being at home for about 2 weeks, we got re admitted back to Southampton hospital as Gracie was struggling at home, we got to hospital and 4 days later we went into a emergency open heart surgery, where she spent 7hours + I finally saw her in PICU, she had her ups and downs but was taken to high care for 5 days, she was taken into the nursery, as she imporoved rapidly. Even though she was improving they was still worried into why she isn’t gaining weight as she should be. We then started her solid food at hospital at 4 months old and got the all clear to go home after a week. Unfortunately during the first 2 weeks of gracie being at home she still wasn’t showing signs of growth development or weight progress and was taken to our local hospital where she spent 4 weeks at. We had blood test taken sweat test taken brain scans heart scans lung scans, there was still no real answer to why she was like how she was. Until one day we had a call from the generic team and finally gave us an answer, she was diagnosed with KBG syndrome. The syndrome has effected her many ways for example, cardiac, gord, developmental delay, speak and language, feeding, cleft palette, hearing loss, weight struggles, seizures, hypothermia. Enlargend teeth, large soft spot, she’s also needed therapy to help her to get to where she is today. After Gracie’s diagnosis and found the cause, we finally went home and was in and out of hospital reputedly and had nurses and other specialist come to visit Gracie on a weekly basis. There has been a few incidents that has lead Gracie to be back in hospital and one of them was having multiple seizures. And was at our local hospital for a couple of weeks. After a year had passed at the end of 2021 of December 24th we was allowed home once again, and since then we have moved upwards. Although the first year of Gracie’s life was very up and down we finally have no emergency trips, just planned visits and has been very positive ever since, she did go back to have surgery to insert a peg (feeding tube) in her belly but was out with in a couple of days, even though we are still learning about KBG we are learning something new everyday, and will come across new things that link to her syndrome later on in life, Gracie is a loving, caring, bright, little girl who loves to paint/draw dance go for walks and take care of others around her, she brights up every room she walks into and has made a huge but positive impact on everyone around her, she’s a huge inspiration. And is our “warrior baby” this is Gracie’s story
#everylinkmatters #KBGSyndrome. 🤍