Support Asma with her Hypoplastic Left heart syndrome ♥️
Asma was born on the 29th February 2024. Prior to her birth, there had been no concerns with her health and she has normal antenatal scans. Very shortly after birth, it was discovered that Asma had an undiagnosed heart condition. Asma was quickly transferred from the hospital she was born at to the intensive care unit at Guys St Thomas Evalins Children's Hospital as an emergency.
Asma has a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). HLHS is a very rare and serious heart condition where structures on the left side of the heart have not properly developed. This means that blood cannot flow normally through the left side of the heart to the body. It is not possible to correct HLHS, however there is three stage set of operations that is offered to these babies to help them to have a better quality of life.
The management of babies with HLHS, requires them to undergo a 3-stage palliative restructure of blood flow through the heart. Asma will require at least three open heart surgeries, with the first surgery happening in the first few weeks of life. Asma has already had to have an additional open- heart surgery as part of her initial stabilisation, and it is expected she will require the first stage of her restructure in the coming weeks.
Asma is likely to require a prolonged stay in hospital. The majority of HLHS babies require continuous admission between birth and their second stage operation at around 4-6 months of age. Presently Asma is currently receiving intensive care therapies and treatment, and is on a life-support machine (ventilator) to support her. There are no current plans for discharge at this time.
This has understandably been a huge shock for Ali, his wife and their families. Normally this condition is picked up during the antenatal period and families undergo a large amount of preparation and counselling prior to birth. As you can imagine this is an extremely worrying time for the family and it's very important that they are at the bedside to be with Asma, but also to be updated by the medical and nursing team.
We would really appreciate you supporting Ali and his family in any way that you can. This had affected our families financial circumstances as Ali has had to stop working to be their at Asma's bedside due to her unstable state. Similarly, Asma will require adjustment at home to to support her with her needs. The funds will help support the family and prepare their home for Asma to better help her condition.
