Help us with our Harlyn-Raine fund
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For those of you who haven’t already met our bundle of joy, this is our 7 month old daughter Harlyn-Raine.
Harlyn-Raine has been diagnosed with a large Ventricular Septal Defect. Commonly known as a “hole in the heart”. In order for a VSD to be considered large, it usually ranges between 6mm-10mm. Harlyn’s hole measures double this at 20mm.
It’s been a very stressful 7 months with already two separate stays in hospital. The last visit Harlyn was 5 and a half months experiencing cyanosis - going blue/grey. She stopped breathing 4 times. However although we were told we were a priority by 999 and they were sending an ambulance via blue lights, we sat there for 20 mins. We called back to get an ETA, which we were then told that 4 hours was the wait for a baby not breathing and suggested a taxi.
During our hospital stay we were advised to put her on an end of life machine as on day 4 of bronchiolitis we were presented with the news that she was going to die and that she was “very very close to the edge of the cliff” as her large VSD was aggravating the already serious virus. However, we made it out before Christmas as we refused the machine and took other approaches. As her parents we questioned and researched. We weren’t allowing her to die. We ended up leaving with 2 medications for Harlyn after this visit. It was the worst ever stay at a hospital as the service and care we recieved was shocking to say the least.
Due to our December stay at the hospital, we were fast tracked for an appointment with cardiology for January 2nd at Oxford's John Radcliffe. One echotest and an ECG later, we left with confirmation that she desperately needed to remain on the new medications, both to help with her heart and fluid. These medications were prescribed because her heart is having to work three times as hard and due to this she is at risk of blood buildup in her lungs. Alongside these we were also given our second referral, but this time for Southamptons childrens hospital.
Harlyn-Raine's medication is such a speciality we had to call 111 to try and obtain it after we were prescribed the incorrect medication from the GP even though it should’ve been an easy repeat. Believe it or not, even a 111 Team leader told us to just give it her anyway. Even though we explained it was completely different medication. In the end we had to call the manufacturer of the medicine to find out who they distributed to closest to us as the NHS couldn’t help.
Fast forward to Jan 15th. Southampton said she must be operated on urgently. The urgent list is up to 3 months.
Harlyn-Raine will be having open heart surgery in order to close the 20mm hole which is close to her main artery.
Due to the current care Harlyn requires, there’s no way mum can attend work- so we go unpaid. The system does not help for issues like this. Daddy is self employed and trying to graft every house improvement/decorating job he can to keep us going. Harlyn will be in hospital 2hrs away for a minimum of 2 weeks and requires a larger amount of care after her operation for at least 8 weeks.
This is a call for help, we are trying to raise as much money as we can for our “Harlyn fund.” This will ensure that we can get the care she requires before and after surgery, alongside the other expenses that are thrown our way.
We would like to thank you for any donations given to help Harlyn-Raine on her journey. Please feel free to share this post, and keep her in your prayers.
If you would like follow Harlyn’s journey please check out her [email redacted]ne
Love to you all xxx
Harlyn-Raine has been diagnosed with a large Ventricular Septal Defect. Commonly known as a “hole in the heart”. In order for a VSD to be considered large, it usually ranges between 6mm-10mm. Harlyn’s hole measures double this at 20mm.
It’s been a very stressful 7 months with already two separate stays in hospital. The last visit Harlyn was 5 and a half months experiencing cyanosis - going blue/grey. She stopped breathing 4 times. However although we were told we were a priority by 999 and they were sending an ambulance via blue lights, we sat there for 20 mins. We called back to get an ETA, which we were then told that 4 hours was the wait for a baby not breathing and suggested a taxi.
During our hospital stay we were advised to put her on an end of life machine as on day 4 of bronchiolitis we were presented with the news that she was going to die and that she was “very very close to the edge of the cliff” as her large VSD was aggravating the already serious virus. However, we made it out before Christmas as we refused the machine and took other approaches. As her parents we questioned and researched. We weren’t allowing her to die. We ended up leaving with 2 medications for Harlyn after this visit. It was the worst ever stay at a hospital as the service and care we recieved was shocking to say the least.
Due to our December stay at the hospital, we were fast tracked for an appointment with cardiology for January 2nd at Oxford's John Radcliffe. One echotest and an ECG later, we left with confirmation that she desperately needed to remain on the new medications, both to help with her heart and fluid. These medications were prescribed because her heart is having to work three times as hard and due to this she is at risk of blood buildup in her lungs. Alongside these we were also given our second referral, but this time for Southamptons childrens hospital.
Harlyn-Raine's medication is such a speciality we had to call 111 to try and obtain it after we were prescribed the incorrect medication from the GP even though it should’ve been an easy repeat. Believe it or not, even a 111 Team leader told us to just give it her anyway. Even though we explained it was completely different medication. In the end we had to call the manufacturer of the medicine to find out who they distributed to closest to us as the NHS couldn’t help.
Fast forward to Jan 15th. Southampton said she must be operated on urgently. The urgent list is up to 3 months.
Harlyn-Raine will be having open heart surgery in order to close the 20mm hole which is close to her main artery.
Due to the current care Harlyn requires, there’s no way mum can attend work- so we go unpaid. The system does not help for issues like this. Daddy is self employed and trying to graft every house improvement/decorating job he can to keep us going. Harlyn will be in hospital 2hrs away for a minimum of 2 weeks and requires a larger amount of care after her operation for at least 8 weeks.
This is a call for help, we are trying to raise as much money as we can for our “Harlyn fund.” This will ensure that we can get the care she requires before and after surgery, alongside the other expenses that are thrown our way.
We would like to thank you for any donations given to help Harlyn-Raine on her journey. Please feel free to share this post, and keep her in your prayers.
If you would like follow Harlyn’s journey please check out her [email redacted]ne
Love to you all xxx
Organiser
Cory Kelly
Organiser