Our son, Kaleb, has a rare heart condition called Hypoplastic Left Heart Syndrome with an Intact Atrial Septum (basically its 'Half a Heart' and only 2 out of 4 chambers). We have set up this page to give something back to help families going through a similar situation we have experienced. We have had to stay in a hospital 2 and a half hours away from home for almost a year with nothing. We have been told our son will not make it and to prepare for the worst on a few occasions so hopefully this will relieve a bit of financial stress, so all the family can be together to make some amazing memories, in what is every parents worst situation.
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 booked 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 Kaleb (3 weeks old) had his second open heart sugery, 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 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. Eventually recovering from various infections and complications we was finally discharged on 22nd August 2015.
Up until this point now (June 2017) 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 we was able to take him on his first ever holiday abroad, Majorca, Spain. (Pictures seen in gallery) or If you would like to check his facebook page out and follow his journey then please do so by searching, Kalebs Cause HLHS IAS.
If there is any way we can help people out there please leave a message on here or his facebook page.
Thank you for your help and support,
Shaun and Kirsty Lewis