Fight for Frankie ❤️‍ raising awareness for children’s organ donation ❤️

Frankie was born prematurely at 33 weeks on 12.7.22 with his brothers ( triplets ❤️) weighing a great 4.15lb! We knew during pregnancy that Frankie had pulmonary stenosis on the right side of his heart and we were expecting a small operation when he was big enough and to have him home pretty quickly . After 4 weeks in nicu he was moved to Birmingham childrens hospital after a rountine heart echo as they wanted to do another echo there. We were told pretty quickly that Frankie has hypoplastic left heart syndrome as well as the pulmonary stenosis and a hole in his heart . The consulant was very worried about him and within 24 hours he was moved to PICU fully intubated . We were told he did well to still be alive after 4 weeks and that surgery could take place but it was very risky .

On the 8th August 2022 Frankie had his first operation at just 37 weeks old corrected ( 4 weeks old . ) This was the Norwood procedure and it was the first of 3 surgeries Frankie would need to have . Hypoplastic heart can’t be “fixed “ but the surgeries can help live a longer life. We were told it was only 60 percent chance of survival after the op as he had the odds against him also being premature . We were given the option to “enjoy him for as long as we have him” or to take the chance .With all the risks we knew we had to give him the chance and we would fight for him with all our strength . At the end of the operation he had a cardiac arrest and we were taken to a room and told the surgeons were massaging his heart to bring him back . After a short wait a lovely nurse from PICU who we will never forget Dannielle told her he was ok and he was back to PICU .

Seeing your tiny baby with a open chest and a scar half the size of his small body hooked up to lines and wires is heartbreaking but we continued to be postive for Frankie as we knew he had the fight . The consultants were worried about him and did not think he would cope when he was extubated . We were told some children do not make it between the surgeries. Frankie also had a leaky valve on his heart now which was monitored but stayed the same .

Fast forward to a long 62/63 days on PICU with many emergencies and obstacles Frankie finally made it up to the ward ( another thing the consultants didn’t expect of him.) Frankie took a long time but finally managed to wean off his airvo support and things started to look better , he was putting on weight and there was talk off the next stage 2 surgery . We were told to hold off from his 16 week jabs as they would go ahead for the surgery in the next 6 weeks if we could stay off the airvo . Unfortunately Frankie struggled after 2 days off the airvo and needed the support back this was thought to be due to having a virus but when he had a heart echo it was discovered that the squeezing off his heart was not good enough and causing his valve to become even more “leaky.”

On Wednesday 30th November we were told the heart breaking news that Frankie could no longer have any more surgeries on his heart as it had been agreed by the team he would not survive the operation therefore they would not try .

Our only option now is for a heart transplant . Again we have been told he might not make it to wait for this as it could be 1-2 year wait , how can you put a time frame on a organ donation we asked , but there are children ahead of him on the list.

Frankie is currently having tests to see if he can even get accepted onto the list but we have hope and we continue to explore all our options . We have heard that other countries may offer the transplant but this is a big cost and he has to be well enough to make it there . The thing is , not many people would donate their babies heart which is totally understandable but it puts children waiting on the list for a long time !

Whilst we are exploring our options we are hoping to raise funds to either pay for surgery abroad or support our family for options here . We are currently seeing Frankie everyday but if he gets moved to a different part of the country our we will not be able to be together as a family . Any extra money raised will be donated to ward 11 and PICU at Birmingham children’s hospital. We would also like to give back to the amazing Ronald McDonald house who supported us over the summer ! 

Please help us if you can , even sharing is a great help , we know times are tough for everyone at the moment . We just want our boy home with his family where he belongs with his big sister Ava and his triplet brothers Finnlie and Archie.

The fight is not over it’s just beginning! #fightforfrankie