05/01/2024
The reason we are doing this… 🥹🥹🫵💔
Real Talk. Thought I’d take time to explain why we are doing this, why we are fighting so hard for this..
We’ve always been told that our little Minnie’s congenital heart defect- Ebsteins anomaly, is so severe that she is irreparable, she’s terminal. Unfortunately Minnie’s tricuspid valve leaflets are stuck flat to the wall of her heart..
Because of this fact, we’re always told that she can’t have the corrective surgery most Ebsteins patients have, the Cone Procedure. However the U.K. surgeons are offering Minnie a complex type of open heart surgery, the Fontan procedure, making blood bypass the heart and circulate through the lungs to acquire oxygen to supply her organs. It’s huge. Whilst we totally respect what a Fontan can do, our team feel it wont increase Minnie’s oxygen levels. This is because she had the first stage of the open heart surgeries (Glenn procedure) in 2019, and her oxygen levels didn’t increase, she’s immensely cyanosed.
The Fontan only buys X amount of time (🥴) and ultimately compromises other organs, it’s really not an option we want to accept willingly. (Again, totally respect that it can be life-saving). Her cardiologist gets it.
We’ve researched every possible alternative, putting in another valve- not an option, 3D printing her heart and tailoring an operation to her- not an option, repairing her valve- not an option. Or so we’ve ALWAYS been told!
Refusing to accept this despite being told since birth, we reached out to Dr da Silva who deals with the most complex hearts & specialises in Ebsteins. He invented the Cone procedure, we knew we HAD to contact him! The man is willing to try and perform miracles!!! That is beyond comprehension for us!!! After feeling like we’ve exhausted all options.. Da Silva is willing to try the Cone procedure to repair Minnie’s valve!!
That ^^^ is why we’re doing it ❤️❤️❤️
We need to raise the funds, Mins needs a couple more tests sent over, then look into getting over there!!
We started gathering data on June 14th, had a response on Boxing Day.. these things take time, months.. that’s why now 🤞🤞🤞🙏🙏🙏