Martha's Story

We were surprised and excited to find out I was pregnant in November 2010. Our baby was unplanned but the most amazing surprise anyone could ask for! At the 12 week scan, it finally started to sink in and it was the most excited and happiest we had ever felt.

At my 20 week scan the radiographer asked us to come back a week later, as he couldn’t get a look at the face and heart properly. We didn’t think much of this, as he said he thought the baby was just lying in an awkward position.

We thought the second scan would just be a quick scan looking at the heart and the face, and naively thought it would confirm everything was ok-and that would be our last scan.

At the second scan, the radiographer was silent for what seemed like an extraordinarily long time, and I started to panic. Nothing could have prepared me when the radiographer turned to tell me that she couldn’t see the four chambers of the heart properly and she suspected something may be wrong with the baby’s heart and she wanted the obstetrician to check. The words “I’m sorry to tell you…” filled me with dread. I felt absolutely sick with worry – the heart – the vital organ! I didn’t know anyone with heart problems – the first thing that I thought was, “Was my baby going to die? Why me? Why me? Why me?”  

We did keep some optimism, when the obstetrician came in and said, we would need to have an echo scan with a cardiologist, before anything was confirmed. This was a 2 week wait, and the longest 2 weeks of our lives.

We tried to stay positive and felt quite optimistic driving up to the echo scan, but my nerves hit me as soon as I sat in the waiting room, knowing that there would be a definite answer to the hundreds of questions going round our heads since the news. The scan again seemed to take forever; I don’t think I have ever felt so sick. When the scan was over the cardiologist told us there was a problem with the heart and I broke down in tears, with my partner and mum trying to calm me down. The cardiologist told us that the baby had Transposition of the Great Arteries and a VSD (hole in the heart). I panicked thinking that if it was a serious heart condition; I would have to terminate the pregnancy, but was quickly assured there was an operation that our baby would have to have in the early stages of life. It was an awful lot to take in and as I looked at the drawing the cardiologist provided to demonstrate the heart defect, I failed to relax as worst case scenarios filled my head. It was all so alien and surreal.

The following months were a blur of check-ups and scans and we were so happy when we found out we were having a little girl and then came crashing down again when one of the consultants talked to us about genetics and the possibility of Downs Syndrome. I had heard this mentioned and was aware that heart conditions were connected to genetics, but we had never been offered the amniocentesis before and now we had a huge decision to make on whether to have the test .We decided not to go ahead with the test as the risk of the baby being born prematurely worried us a lot more than having a baby with Downs or genetic problems. We wanted to keep the baby as safe as possible and as strong as possible, and I guess we knew that even if tests came back positive we would still love the baby.*

I had to be induced so that I delivered our baby in a hospital that could provide the best care and had a specialised cardiac unit. If Martha’s heart condition hadn't been picked up in the scan, then it is likely that we would have been moved quite soon after delivery and this could have been a far more traumatic situation for us and Martha.

When my inducement date came, I tried not to think about anything else but delivering the baby safely and luckily had a speedy delivery of 3 hours. Martha weighed a healthy 7lb 6oz (3.35 kg) and the first thing I asked as she came out “Is everything ok? Please tell me everything is ok”. I got to hold little Martha Rose for a while before she was whisked off to Neonatal Intensive Care where she stayed for a week.

Luckily for us Martha had a hole in her heart meaning that although the arteries were the wrong way round, the hole allowed the blood to mix. So after a week in hospital we took her home to wait for an operation date. It was amazing having Martha home, and we almost began to feel like normal parents having their baby at home, yet we knew that we would be bringing Martha back to the hospital to undergo complex open heart surgery very soon. It was such an emotional time.

Martha went in for her operation on Thursday June 9^th. I will never forget that morning, as I looked at her innocent beautiful face and felt so guilty knowing what she was about to have her little heart (the size of a walnut) operated on. As we went down in the lift to hand her over to the anaesthetist I felt utterly useless and there was profound sense of guilt that I couldn’t protect her. We waited 7 hours to hear whether the operation was a success and if she had come though ok, that was the hardest thing either of us has ever had to do. Seeing Martha for the first time after the operation was very tough. She was swollen and covered in wires. She was floppy from the muscle relaxant and her skin was almost see through – she didn’t look like the same baby. I just wanted to scoop her up and for her to open her eyes.

Martha made a very speedy recovery from the operation – 3 days on intensive care and 3 days on the ward, and then we were able to take her home-properly this time and hopefully for good. Martha has had no set back yet and all the follow up scans have been positive. I don’t think we could have hoped for a better outcome for Martha, and at nearly 7 months now she is thriving!

Having the defect picked up on the scan has meant we were better prepared for the birth of Martha and know that if it had not been picked up on there was always a risk that we could have lost our baby, maybe not straight away, but she could have only lived with the defect for a limited time. Even though we knew Martha would need an operation, nothing prepares you for the immense sense of love you feel for your baby when they arrive – and knowing they have been so protected in the womb and will face such drastic surgery is heart breaking. We are eternally grateful for it being picked up during the pregnancy as it allowed us to try and get our heads around Congenital Heart Disease, read other’s experiences and we have received such high class medical care from the Cardiac Units at the hospitals. The cardiac liaison nurses were amazing.

Martha is a true fighter and we smile now, when she has her heart check-ups and she tries to eat the Consultants fingers! And we think about the journey we have all been on – especially Martha. We do always have in the back of our heads that something else may happen or she’ll need further care but for now the future looks bright for Martha and she has had the best team to help her (and us) through.

Caroline and Mathew, 2011

* One thing I found was the information we were given on Downs Syndrome and genetics was very different between hospitals. One hospital suggested we should have the amnio due to links with heart defects and one hospital queried why we had been offered it due to small number of links with genetics and our particular heart defect, TGA. I think the help both hospitals gave us was amazing, but I think all the units should give similar information – especially as having an amnio is a huge decision to make, especially at 32 weeks, like I was. Having info. on this side would have lessened the stress so much, because having a heart baby is hard enough in itself, let alone worrying about genetics problems and amnios.