Our Daughter Amelia Isabel Hine was born on 29th September 2006. She was born with a form of Congenital Heart Disease (CHD), a condition known as Tricuspid Atresia. Tricuspid Atresia is one of the rarest, most complex of Heart Conditions, affecting 8 out of every 100,000 births in the UK, this does not include those children lost during pregnancy. One out of these 8 children is also born with other complications, unfortunately, Amelia is one of these children.
Her condition was discovered during Lisa’s 20-week scan. At that time we had no idea what heart disease was or what it involved. The excitement of our daughter’s birth was dampened by the thought of what was ahead, almost like facing the unknown. We quickly learnt about her condition to gain whatever understanding we could of how she would be treated to remedy her problem, we had to. Amelia’s condition is known as Type 1B Tricuspid Atresia (with normally related great arteries). She has no Tricuspid Valve and a barely formed Hypoplastic Right Ventricle. She also has a growth at her Pulmonary Valve, a narrowing of the Pulmonary Artery (Mild Pulmonary Stenosis) a large ASD (Atrial Septal Defect) between her two Atria and a VSD (Ventricular Septal Defect). The bottom line is, to date; there is still no known cure for Tricuspid Atresia (or any single ventricular heart condition) and at some point in her future she will require at least one heart transplant.
There are three stages involved to prolong her life expectancy. Transplantation is an option but it is considered later on in the child’s life, the three surgical procedures are thought to give the child a better chance early on. On Monday 23rd August 2010 Amelia underwent the Fontan Procedure to complete her surgical treatment from the Glenn Shunt (previous procedure). Basically, her heart is still not normal but her blue (deoxygenated) blood and red (oxygenated) blood are now completely isolated from each other. There were obvious risks involved with the operation, which we were made aware of beforehand, such as sudden death, a stroke, excessive bleeding, infection or the chance her body just wouldn’t accept the foreign material being used to repair her heart. Amelia’s Glenn operation three and a half years ago went very well without any complications, however, her recent Fontan was a completely different story.
We took Amelia down to the Anaesthetists room where she was given gas and put to sleep. This was by far the hardest thing we have ever had to do, saying goodbye to our precious, helpless, little Amelia not knowing what the outcome would be. We occupied ourselves for the morning expecting to see her in Intensive Care some five hours later. Seven and a half hours later we were called to one of the parents rooms for a chat with the anaesthetist. Our hearts racing we sat patiently to hear of the days events in surgery. Amelia had made it to intensive care, but not without a fight.
Not known to the surgeons her heart had fused itself to the scar tissue of her Glenn Shunt, beneath her sternum, causing her heart to rupture on entry into her chest. Midway through the operation the path for the connection of the Inferior Vena Cava to her Pulmonary Artery was unclear. This resulted in Amelia being put into Cardiac Arrest for fifteen minutes, her body being sent from 37 to 18 degrees. Her heart had to be shocked back into rythym causing it to lose it’s regular beat.
We spent six days in the Intensive Care Unit (PICU), within the first day there were complications post surgery, including fluid on her lungs which caused her left lung to collapse and resulting in multiple lung drains and this almost cost Amelia another visit to surgery. She also had a severely Irregular heart beat which required a temporary pacing machine to keep a constant rhythm as there was nothing without it, and she also developed Pneumonia.
During our four wonderful years with Amelia, our times spent in hospital and meeting other parents, we’ve come to realise the serious lack of awareness regarding Congenital Heart Disease. Unless you have a child with a CHD or are closely related to one many people have no idea it even exists and it’s such a shame as it affects so many families throughout the world. We have four other children, three older than Amelia and one younger, who are also dealing with Amelia’s condition and having to spend time apart is difficult. We’re just one family, one of thousands, who unfortunately have to go through the stress and torment of watching our child go through what seems like hell. As parents you’re completely out of control of what is happening to your child, their lives are in someone else’s hands. Because of this we need to raise more awareness about Congenital Heart Disease (CHD) to help the children and families affected by them. There are 35 medically recognised CHD’s and they are the number one cause of death from a birth defect, killing twice as many children as cancer every year.
Little Hearts Matter is the charity we have chosen to support. When our children are born with a serious single ventricle condition, we become overwhelmed by the magnitude of their problems. Many for the first time become aware of just how many families go through these problems every year. A huge number of families once they are past the trauma of early surgery go on to raise vital funds for the charity and this provides a valuable source of funding. However, this is always short-term and the charity needs to have long-term income streams.
If a child is born with a single ventricle heart condition it basically means they only have half a working heart, without surgery they will die. Medical advancements in surgical techniques and support have allowed these children the chance of life, however, even those who survive the three stages of surgery will require a heart transplant later in life. When we become aware that a little heart is broken it is in our nature to want to help. The difficulty is being too unaware of the problem to realise how to help in the best way. The charity works to highlight the medical needs of the children to advance the treatment and care they receive throughout the country. Little Hearts Matter offers all of it’s information and support for free ensuring anyone who needs help in any way receives it. Whatever the problem the charity staff and volunteer parents are only a phone call away to provide information and make the medical information easier to understand. The information and support services help parents, grandparents, siblings and most importantly the child affected feel less alone and confused about their problem. Little Hearts Matter works with social service teams to promote the social care required for each child and help raise awareness in schools that can pose many challenges for children born with half a heart. It organises regional and national events to bring families with similar experiences closer together. Little Hearts Matter is key in helping and supporting the unfortunate affected children and their families enjoy and live their lives as normally as possible, something we take for granted, until we become part of a CHD affected family.
Two months on. The toughest and bravest person I think I will ever come across.