NH is caused by severe fetal liver disease where excess iron accumulates in the liver and other parts of the body, this often results in life-threatening conditions such as liver failure. NH is the most common cause of liver failure in newborns and the most common reason for a liver transplant in newborn babies.

Although the exact cause of NH is not yet understood, researchers believe it is caused by maternal-fetal alloimmunity, a condition where antibodies from the mother travel over the placenta and mistakenly attack the fetus.

Tommy’s Story:

Tommy was born with Neonatal Hemochromatosis in October 2021, within 12 hours of birth it was suspected something was wrong.
Tommy was transferred to Great Ormond Street and then Kings College Hospital where he received his diagnosis at 13 days old. It was when Tommy was 4 weeks old that his parents, Lauren and Callum, received the shattering news that he would need a liver transplant to survive.

After many applications, it was Lauren’s best friend Kayleigh that would become Tommys donor and on the 17th December the surgery took place. The operation wasn’t without its difficulties but after 8 hours Tommy was out of surgery and spent a further 3 months in hospital recovering. Lauren and Callum remained at Tommys side throughout his 5 month stay in hospital.

We want to ensure this can be the case for any families that will sadly go through the same devastating ordeal.

Our Aim:

Tommy’s Journey hopes to create awareness around Neonatal Hemochromatosis and Organ Donation. It is so important to us that families can remain together when their baby receives a diagnosis of NH. As a charity we hope to reduce the financial pressures that this journey may bring so families can focus on their little one.