Jude is our rainbow baby, he also has a serious congenital heart defect – Double inlet left ventricle (DILV) and Transposition of the greater arteries (TGA).

DILV - In this single ventricle heart condition there is one large pumping chamber (ventricle) on the left side of the heart into which both collecting chambers (atria) empty their blood. This may affect the valves sitting in the middle of the heart. There is usually a large hole (ventricular septal defect) in the middle of the heart and a small pumping chamber (ventricle). The two major blood vessels leaving the heart, the pulmonary artery to the lungs and the aorta to the body, may leave from either the left or right sides of the ventricle and they may be swapped around (transposed). This means that a mixture of oxygen-filled and oxygen-empty blood passes to the lungs and to the body.

Jude has undergone three major heart surgeries. His most recent open heart surgery was in October 2023. This was his Fontan completion surgery, which was the third and final palliative operation.

Total carvo-pulmonary connection (Fontan completion). Before this surgery, Jude's blood oxygen levels had dramatically deteriorated to SpO2 77%. He always had a cyanosis complexion, and decreased energy levels.

This operation is to permanently separate deoxygenated and oxygenated blood supply. This increases the amount of deoxygenated blood to the lungs and improving the amount of oxygenated blood flow around the body.

Post operatively – Jude’s chest drains were all removed by day 4! This gave him the confidence needed to get up and move around the ward.

MCT diet – Medium chain triglycerides. After surgery and a further 4 weeks after removal of the chest drains, Jude needed to follow a strict MCT diet. He could only consume foods with 0.2g> of fat, with a daily exchange allowance of 4g per day. He managed this diet very well but is happy to be able to eat cheese again!

We were home 10 days post op, SpO2 93%!

Jude has now started his Warfarin journey. Due to having had open heart surgery and the risk of having a stroke/blood clot develop, Jude now takes daily Warfarin and will do for the foreseeable future. We are currently having regular visits to BCH with the anticoagulation team to check his blood INR levels are with normal range. We hope sometime in the new year to be able to perform home INR testing, thanks to the generosity of the Young at Heart Charity, who will be gifting us with an INR machine.

Jude is thriving since having had is Fontan completion, he is benefiting so much and is full of energy. He had an amazing post op cardiac review, Dr Harris is very pleased with his recovery.

We run a just giving page each year for Birmingham Children’s Hospital. In 2023 we shared the donations between BCH and a charity called Pyjama Fairies – Who are a volunteer based charity of seamstresses who make beautiful surgical pyjamas and gowns for children who will be visiting hospital for operations or long stays. This year, 2024 we will fundraise for BCH and the Young at heart charity.

Every birthday and Christmas will be a milestone and we will forever be grateful to all the staff we have met over the years and want to show our appreciation by raising funds for this amazing hospital and also to spread CHD awareness. This year we will celebrate Jude's 6th birthday!

Kim, Rob, Jonah and Jude Underhill xxxx