Kalebs Cause HLHS

Kalebs Cause HLHS This page is about our special little boy, Kaleb, who has a very serious complex heart condition, 'Hypoplastic Left Heart with an Intact Atrial Septum'

Kaleb has a rare heart condition called 'Hypoplastic Left Heart Syndrome with an Intact Atrial Septum' which is basically HALF A HEART. We first found out about Kalebs heart defect when we went for our 20 week scan at our local hospital in Hull, East Yorkshire. After attending another scan the next day with a specialist sonographer she confirmed that Kaleb had Hypoplastic Left heart Syndrome and b

ooked us in to visit Leeds General Infirmary with a Cardiac Consultant the following day. After our visit to Leeds we had been given 3 options, 1- Termination, 2- Allow Kaleb to be born with no intervention (meaning he would die shortly after birth) or 3- go for surgery after being born. For my wife and I there was only ever going to be one choice - give him a chance to show how strong he was. On regular scans at both Hull and Leeds they discovered a further problem with his heart, his Atrial Septum getting smaller. Leeds them booked us in to visit a cardiologist at Birmingham Womens Hospital at 28-30 weeks. On visits to Birmingham Womens Hostial the chances of survival were getting smaller and the options were still the same. Kaleb was born on 21st October 2014 by planned caesarean at Birmingham Womens Hospital (37 weeks). Once he was born he was ventilated and stabilized within 10 minutes, then blue lighted from Birmingham Womens to Birmingham Children's Hospital in a record 13 minutes. Once paperwork was signed and a generous 20% survival rate was given he was ready to have the Hybrid Procedure at not even 30 minutes old performed by Dr.Stumper and Miss.Khan. On 12th November 2014, Kaleb (3 weeks old), had his second open heart surgery, The Norwood Procedure which was performed by Miss.Khan. After spending a long period of time in Birmingham we was discharged in January 2015 but only made it home for 4 days before being rushed back to Birmingham for more surgery. On 12th February 2015 Kaleb had his third open heart surgery, The Glenn Procedure, performed by Mr.Barron. We eventually got home again in the April 2015 but only made it home for 5 days this time. We was rushed back to Birmingham for a keyhole surgery which them led him to being put on an oscillator and at one point being told that "It maybe time time to let him go" but we all battled together to get him off it and fought forward. Eventually recovering from various infections and complications he was finally discharged on 22nd August 2015. Up until this point (June 2017) now from being discharged in August 2015, Kaleb has been in our local hospital on one occasion and the other occasion has been for key hole surgery in Birmingham Childrens, 24th February 2017. In May 2015, we was able to take him on his first ever holiday abroad, Majorca, Spain. (Pictures seen in gallery). If there is any way we can help people out there please leave a message on here. Thank you for your help and support,
Shaun and Kirsty Lewis

10/09/2025

This boys journey he has been through so much and lives life to the full with half a heart. He’s Ed Sheerans biggest fan. Can anybody help get a message to Ed Sheeran some how. Kalebs got over four thousand followers on his page. I don’t know where to start to get message across. I’ve messaged his official tik tok page but heard nothing back. Kalebs kidneys & liver are showing signs of damage which is so worrying. I just want to try and reach out to Ed somehow to make our boys day. His life so far has been hard with many surgeries. To hear him sing so beautifully it’s everything. I know it would mean the world to get a message off Ed

Discharged!! He's doing OK but tired from surgery and not much sleep during the night when your on open ward so it'll be...
20/08/2025

Discharged!! He's doing OK but tired from surgery and not much sleep during the night when your on open ward so it'll be a relaxing next couple of days. We've been told details of what's been done in this surgery

Kalebs is already up and about after suregry. So strong
19/08/2025

Kalebs is already up and about after suregry. So strong

Back from surgery. Keep you updated
19/08/2025

Back from surgery. Keep you updated

Ready for surgery
19/08/2025

Ready for surgery

All checked in... 5 star, all inclusive, shame theres no swimming pool and its not 25'CKaleb is booked in for a cardiac ...
18/08/2025

All checked in... 5 star, all inclusive, shame theres no swimming pool and its not 25'C
Kaleb is booked in for a cardiac catheter booked for tomorrow for investigation. We will try to keep you updated

Kaleb had his appointment today in Birmingham Children's Hospital. Heart function seemed to be a 'good' heart function, ...
05/06/2025

Kaleb had his appointment today in Birmingham Children's Hospital. Heart function seemed to be a 'good' heart function, he has a leaking valve and they are looking at doing surgery in the next few months. Sorry about lack of updates for everyone who follows kaleb and wants to know how he is doing, again, just enjoying life and every moment we have with him

Hello everyone, hope you doing well at the start of 2025. Kalebs Auntie Clare is raising money for DOVE HOUSE HOSPICE an...
15/01/2025

Hello everyone, hope you doing well at the start of 2025. Kalebs Auntie Clare is raising money for DOVE HOUSE HOSPICE and is actually participating in their show 'strictly learn to dance' in April. She's putting the work in and is training hard to put on a great show.

She and the team are hoping to raise as much as possible for this great charity, there is a target in mind but hopefully with this post we can exceed it and do us proud. If you can then this WILL and is going to make a difference. You can stay anonymous or post your name, entirety upto you. Please click the link https://www.justgiving.com/page/clare-kistenmacher-1733161424323?utm_medium=FR&utm_source=CL

Help Clare Story raise money to support Dove House Hospice

Wow, this kid is amazing!! From all he has been through in his life, tonight he achieved 400m in the pool, his last asse...
03/09/2024

Wow, this kid is amazing!! From all he has been through in his life, tonight he achieved 400m in the pool, his last assessment was 50m so a MASSIVE jump. The instructors was so happy for him

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