4 May 2011 - The start of the journey

We went for our anomaly scan yesterday morning and were told that our baby has some serious heart abnormalities. We have been referred to the John Radcliffe Hospital for further tests and thankfully managed to get an appointment for a detailed heart scan yesterday afternoon. The news we have received is not good. Basically, this is how I understand it at the moment (apologies if it is a little technical):

Normally the heart has two sides each with two chambers. Oxygenated blood leaves the heart on the left side and goes to the body where the oxygen is used and then the deoxygenated blood returns to the right side of the heart, passes through the two heart chambers and is pumped to the lungs where it picks up oxygen. This newly oxygenated blood returns to the left side and is pumped around the body again. So one side of the heart deals with oxygenated blood and the other deals with deoxygenated blood and the two are not mixed.

With our baby there are several defects which mean this process is not happening as it should and there is a mixing of the oxygenated and deoxygenated blood in the heart and the blood cannot flow around the body as it should. Firstly, the valve (called the mitral valve) between the two chambers of the left side of the heart (left atrium and left ventricle) is not there which means there is a complete blockage. This means that the left ventricle (bottom left chamber of the heart) is underdeveloped. The lack of mitral valve would normally mean that no blood flow reaches the left side of the heart resulting in this being considerably underdeveloped (a condition called hypoplastic left heart) and the aorta (the main blood vessel which provides blood from the heart to the rest of the body) being narrowed. The left side of our baby's heart is small but not tiny and whilst no narrowing of the aorta was seen on scan, it is likely to happen or have happened further along. There are also two holes in the wall separating the left and right side of the heart (called ventricular septal defects or VSDs). This has has allowed some blood flow into the left side of the heart. One of these is very small, the other is a little bigger. They are likely to get smaller as pregnancy progresses and the small one may close.

We have been told that babies usually tolerate this situation fairly well until birth. If we make it until term, and baby is born alive then surgery to ease the heart defects (although not correct them) may be an option. If not, or we choose not to have surgery, then the baby will survive a few days or weeks at best. If surgery is an option then we are looking at three major operations - one shortly after birth (which I think is called a Norwood procedure), one around 3-6 months and one around 2-4 years (Fontan procedure). The odds of our child getting through these operations and making it to age 5 is around 50%. Children who survive to 5 often survive to around 15 and then many will survive into early adulthood. The first Norwood procedure was performed in 1981 so the oldest survivors are in their 20s - we don't know what life expectancy is but of course it is likely to be significantly reduced and even getting to the age of 5 will be an achievement. If the child can get through all three operations than they can generally live a fairly normal life although will not be winning any gold medals in running.

The cardiac consultant thinks this is likely to be an isolated abnormality and not caused by chromosomal (genetic) abnormalities as everything else appears to have developed normally on scan. The smaller of the two holes in the heart is a cause for concern particularly with surgery. At this stage, we have been told it may be an option but this situation may change and we will need to discuss this with the team of surgeons at Great Ormond Street Hospital. We have been given the option of a termination which we have declined - our baby is in God's hands and we want to give her every possible chance that we can.

We hadn't planned to find out the gender but this news has changed that - we both feel very strongly that we need to be able to bond with our baby as much as we can right now and this information will help us to do that. On scan it looks like we are expecting a baby girl. Currently she is still nicknamed Sprout but we will be giving her a name very soon. She is very wriggly at the moment and we are looking on each day that we can have with her as a huge blessing.

We will continue to have repeated heart scans throughout the pregnancy to see how things develop and will be seeing a consultant for our routine check-ups at our local hospital. Obviously we are both devastated by the news - my mum has come up to be with us and Michael's parents have also been wonderful. We are trying to take each day as it comes but we know we have a very dark and difficult journey ahead of us and are praying very, very hard for the best possible outcome for our little girl.

Please can you keep us in your thoughts and prayers during this difficult time. I know that it is hard to find words that can help us during this time, but the support of our family and friends is so very important to us - we want you to feel that you can phone and talk to us still and ask about our little girl even if you feel you don't have the right words.