Heartkid Stories

Chelsea, SA

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Having two girls already, we were pleasantly surprised to find out our third planned pregnancy was twins, and yes, two more girls! Our world soon began tumbling down when one of our twins was diagnosed with a very complex set of heart defects, at my 26 week ultrasound. My only worry was if my little girl would be here for the long term as I loved her already.

We were referred to the Women’s and Children’s Hospital Cardiology department, in Adelaide, for follow up. A very thorough echo was performed and we were able to meet with Cardiologists, Clinical nurses and social workers in the weeks leading up to the birth. The information we obtained from Cardiology did give us some reassurance that our little girl was more than likely going to survive and have a good long term outlook. This helped prepare us for everything that was likely to happen. I spent many late nights scouring the web for everything I could find. It was all consuming. I then decided to record our journey. Somehow writing it all down was good therapy and looking back, it has been valuable to read about everything Chelsea and our family went through.

We were told her heart condition was reasonably complex. Our little twin b (as she was called in-utero) was diagnosed as having double outlet right ventricle, a large ventricular septal defect and critical pulmonary stenosis. I recall thinking this was a whole lot of things for one tiny little baby to deal with.

Finally the day came for the twins to be born. They were delivered by planned c-section with so many people present in theatre it felt like a stage show! We had the head of paediatric neonate intensive care, paediatricians and nurses for each of the twins, aneasthesia staff and the theatre team along with my husband Jeff and my obstetrician. The delivery went well with Amelia born first at 2.2kgs and our little heart baby Chelsea arriving two minutes later at 2.1kgs. She was reasonably blue, but we expected that to be the case. They were checked over and Chelsea was taken for an echo, then to the intensive care unit for the prostaglandin to be commenced. This was the drug that would ensure her duct would remain open until she could be transferred to RCH Melbourne for a shunt procedure. For the next week, Amelia roomed in with me in hospital (a very easy baby, thank goodness!) and Jeff looked after the other two children at home. We all shuffled back and forth between my hospital room and intensive care to see Chelsea. It was overwhelming for our big girls with mum not at home, two new sisters one of whom was surrounded by complex monitoring systems. We did our best to normalize everything for the girls and keep our brave faces, but inside we were pretty fragile.

Chelsea was on the small side for heart surgery and it was decided that she would be kept in Adelaide until she gained weight. All good in theory but on day 5, complications started when Chelsea was diagnosed with an infection in the bowel, which, as we were to discover would require operations in the future. This often affects preterm babies, particularly those who are unwell from other conditions and where oxygen to the organs is compromised. As she was critical we were asked to stay very close to the hospital in case they were developments. We were told that although it had been detected very early, it could go either way. My own frantic research on the web discovered that babies have a 50% chance of survival. Oral feeds were stopped and she was administered massive doses of antibiotics to try and stop the condition. It was these unexpected extras that were horrifying. She may have done ok with her huge heart hurdles but we were well aware that other complications could come and destroy our hopes & dreams without warning.

Needless to say, there were so many mixed feelings about that time. We were totally besotted with both our new little babies but also absolutely distraught with worry about how Chelsea would handle all of the challenges she had in front of her.
Over the next week, the bleeding in her bowel stopped and she began to improve. The medication had worked!

Around two weeks, Chelsea started having heart racing episodes. After a few tests and lots of observation, it was concluded that she had an arythmia. More medication was required and within a week of adjusting meds and doses, her heart started to behave more consistently.

The journey continued with more steps back & then eventually forward. We were starting to become accustomed to life with a sick child. By the beginning of February, Chelsea had managed to gain weight and was ready to go to Melbourne.

Chelsea arrived in Melbourne with the Flying Doctors around the same time as us and was sent off for surgery the very next day. That was the darkest few hours of our lives – WITHOUT A DOUBT – EVER! We had no idea whether our beautiful daughter, who we had never taken home, held properly in our arms without tubes & beeping machines etc, would ever wake up and come out of heart surgery alive. It was so distressing and I felt like I was going to pass out or have a heart attack myself with the pain of leaving her with the surgical team.

Anyway, we dragged ourselves away and tried to keep ourselves distracted by getting some grocery shopping done – we had a family to feed! After what seemed an eternity we got a call from the surgeon to say that the procedure had been successful and that we could see her in paediatric intensive care unit in one hour. The relief was unimaginable! We went down to see her but were kept waiting for over 2 hours. At one point a nurse came rushing out to tell us that there had been some emergency complications and they were having to re-open her chest right there in the intensive care unit. Our hearts sank. We honestly thought were about to lose her. About half an hour later, we were told to come and see her and that she was fine. We were told her shunt had formed a blockage and that they did indeed have to re-open her chest to remove the blockage. When we entered her little chest was still open, but covered with film. The surgeon told us that the next couple of hours would tell us whether or not the operation was successful. Thankfully Chelsea managed to get through that next couple of hours and it looked as though everything was going to be all right. Relief again! What a rollercoaster!

When we went in to see Chelsea, she looked almost unrecognisable. Her face was bloated, swollen and bruised. Her chest was still open with a wound drain hanging out. I was overwhelmed to see so many lines hanging out of her little arms and feet, along with numerous beeping machines and monitors including the ventilation unit. We felt so many emotions. We really felt for our tiny girl, who had already had her chest opened twice and had all these tubes and machines keeping her alive. I kept having flashes of losing her and thinking she may not live a life with her other 3 sisters. All the while, we sat holding her little swollen hands, tears of happiness streaming down our cheeks, thankful that at least she had made it through this first heart surgery.

The next few days, Chelsea raced ahead and amazingly got clearance to fly back to Adelaide on day 5! She returned to the Women’s and Children’s Hospital. She needed to recover and of course she still needed her bowel fixed. Unfortunately Chelsea soon took a few steps backwards. She showed signs of being unwell a few days after returning from Melbourne. She was very pale, almost grey looking. She had developed some sort of gastro bug and started going downhill very fast. Our cardiologist said the surgeon was pessimistic about the upcoming scheduled bowel surgery, but would review the case in the morning.

When we arrived in the early hours of the next day, Chelsea looked much worse. The surgical team came to review her and the head of surgery told us the surgery would be postponed and that he thought she looked ‘awful’! Before too long, the cardiology team arrived as did the team of intensive care doctors. Orders started flying around and a flood of nurses swarmed over Chelsea’s bed. The consultant in charge ordered an immediate blood transfusion, fluids and two broad spectrum antibiotics. I remember thinking we had just about every available person in intensive care attending to Chelsea in some way.

Next the results came back from her echo only to reveal a cyst type mass on the outside of the heart. Another more thorough echo was ordered and the cardiologist’s early diagnosis of the ‘thing’ was a pericardial cyst. Treatment would need to be carried out in Melbourne, presumably resection or drainage. By this time we had almost had enough. Our poor little darling had really been put through the wringer. It seemed there was an ever increasing number of hurdles she was having to jump. When would it stop?

As the week progressed, Chelsea improved in spirit, but her belly was really playing up. It became quite distended and hard lumpy bits of her bowel starting showing through her tummy. All the while, the surgeons were on standby for emergency surgery. Over the weekend she improved and surgery eventually went ahead. Once again we had to leave her with the surgical team. Lots more tears. We waited and waited, trying to distract ourselves. Eventually the surgeon phoned to tell us that a large stricture on the right side of her bowel had been successfully removed. The two ends had been rejoined and she had been stitched up. Our little girl was now the proud owner of 2 big scars but she had made it!

Chelsea was soon transferred to the ward and eventually, on day 65, we were able to bring our baby girl home for the first time. It was a magical day, particularly for our older girls who were desperate for our whole family to be together again.

The next few months were very demanding, with 4 children under 3, but blissful for us all to be at home together. We were totally sleep deprived but felt truly blessed. After nine months of regular visits to Cardiology Clinic, we were referred to Melbourne once again for further surgery. Our emotions soon started to spiral out of control once again as the fears of surgery were contemplated.

The day soon arrived and we all headed off to Melbourne. Two grandmothers, 4 children, Jeff and I flew to Melbourne where we had to rent two apartments. Unfortunately, due to a shortage of intensive care beds and nurses, days turned into weeks as we waited and waited. This was incredibly stressful, as Chelsea had her surgery cancelled 4 times! Finally a lengthy bypass surgery was performed, which all appeared to go well. However little Chelsea didn’t respond as well as everyone would have liked. Her heart, whilst repaired, was not functioning well. We were told this was not uncommon after a major surgery as a swollen heart and lengthy bypass surgery can cause the heart to take a little while to work correctly. As a result they decided to re-open her chest to take some of the pressure off! Oh not again!

Over the next week Chelsea made a few baby steps forward each day and after a long week in intensive care, she was finally transferred to the ward before returning to Adelaide a few days later.  It was so good to be home. Chelsea had a hard time recovering over the following weeks. Naturally, she had pain in her chest. Slowly she improved and today you just wouldn’t know by looking at her the many trials she has had to endure. How these heart kids get through these immense ordeals inspires, amazes me and overwhelms me.

Chelsea is now in primary school and for the most part she keeps up with all the fun & mischief along with her siblings and most people would have no idea what she has been through.  She recently stood up in front of her classmates and shared her baby photo with her big zipper scar & told them all about her heart surgeries as a baby. We’ve always encouraged her to be super proud of that zipper & wear it as a badge of bravery.

It’s difficult to describe how emotional, stressful and heart-wrenching our journey has been, particularly during that first year, for our whole family.The journey has come at a huge cost to Jeff and me, both emotionally and financially, with many flights and a total of 5 weeks in Melbourne.

Our older girls had to give up their activities, swimming and playgroup, and we isolated ourselves from family and friends for fear of bringing any ‘bugs’ into our home and therefore jeopardizing Chelsea’s chance of survival. More than any of that, our darling Chelsea has had to endure so much to her tiny little body, all because she won that lottery that no-one would ever want to win. It’s very likely she’ll need ongoing valve replacement heart surgery throughout her life.
Family – finally together at home

HeartKids has supported us throughout this journey. We are most appreciative of the work of their Family Support Coordinator and all the services they provide to families like ours. Whilst our journey appeared unique, we encountered scores of others enduring similar trials. Heartkids South Australia has also allowed us to meet many other wonderful families who have shared similar painful experiences and helped relieve our self imposed isolation. We cannot thank the Adelaide Women’s and Children’s Hospital, the Royal Melbourne Children’s hospital and HeartKids SA enough, for their support and dedicated work for children with CHD.

Please support Chelsea and the many thousands of other children like her.