The Story of My Heart Warrior

I have been trying to write this post for quite some time now, but I kept putting it off. Partly because I just couldn’t find the words, partly because it was just too painful. Even now, I cry whenever I think about it. Better late than never though, right? I hope that talking about our journey will help others going through the same thing.

It all began on the day my little boy was born, the 2nd of October 2015. After a 23 hour back-to-back labour, we welcomed our son into the world. He was perfect. I was overwhelmed with love and happiness. When he had his newborn check everything seemed fine, until they told us that he had a heart murmur. Neither of us knew what this meant but we didn’t think too much of it at the time because the doctor reassured us that lots of babies are born with them. We were told they often go away by themselves within the first few weeks. Through the sleep deprivation and pain, I didn’t think to ask any more questions at the time.

We went home the day after Elijah was born and spent the next few days trying to settle into life as a family of three. It was hard. I was determined to breastfeed, and I had lots of support from the midwives and the breastfeeding support team in our local area. However, I was still in a lot of pain, I was beyond exhausted and my milk didn’t come in until day 4. I could barely stand or walk by myself and Joel had to help me lift Elijah because I just didn’t have the strength.   

Elijah one month old

On day 5, everything changed. Elijah had jaundice, he had lost more than 10% of his birth weight and the lovely midwife that came to visit us that day wasn’t happy with the way I looked either. I remember laying on the sofa barely being able to speak without getting breathless and having pain in my chest and back. And so, we were readmitted to the hospital. They did lots of tests on both me and Elijah. They were kind enough to let Joel stay with me, which I really needed. Elijah was very dehydrated so we started giving him top ups of formula. They were going to give him light therapy for his jaundice but he didn’t need it in the end. I had developed an infection from leftover pregnancy tissue in my womb and I had to have a D&C to have it removed. I had a high temperature, very heavy bleeding (sorry for TMI) and I couldn’t stop shaking. We spent a few days in the hospital to make sure we were both ok before we were allowed to go home again.

When we were discharged from the hospital for the second time, Elijah was almost two weeks old. I continued to breastfeed and top him up with expressed milk and formula but his weight gain was very slow. We had lots of trips to the doctor and visits from the health visitor over the following weeks.

We got a referral from the doctor to see a pediatrician, but our appointment got cancelled and we had to wait a few weeks before another appointment was available. He was about 8 weeks old at this point. The pediatrician did a scan of Elijah’s heart and told us it looked like he had a hole in it. He didn’t explain what this meant, just said that we would need to go for further tests and scans at a specialist hospital.

It was about 3 weeks later that we had it confirmed – our baby boy had a Large Ventricular Septal Defect (Large VSD). From this point, everything moved fairly quickly. They explained that the reason Elijah wasn’t gaining weight because he was in heart failure. His tiny body was working so hard to try to pump enough blood through it, but it couldn’t and he was failing to thrive. They told us he would need surgery and they hoped to do it within the next three months or so. We were given a prescription for a high-calorie formula that would help Elijah to gain enough weight for the surgery. We signed consent forms and that was that. It was just a waiting game.

We had a phone call from the hospital just before Christmas saying that they might have space for us to go in that weekend, but they couldn’t confirm it until closer to the time. So our first Christmas as a family of three came and went, and we received a phone call that weekend. They asked us to come in the following afternoon for Elijah to have some tests done so he could go into surgery the following day. I cried, a lot. I wondered whether this was all my fault. Could I have done something to stop this? Should I have done something differently? We packed a few bags and set off for the hospital the next day.

We arrived at the hospital on the 3rd of January 2016 in the afternoon, allowing plenty of time for the doctors to come around to do some tests and observations on Elijah. They didn’t come until midnight when Elijah was asleep. We had to wake him up and he screamed as they poked and prodded him. He was allowed one last feed at around 4 am.

Elijah the night before heart surgery

We got up at 6 am the next morning and waited to be taken down to the theatre. We didn’t have to wait too long because Elijah was first on the list. Elijah has his surgery on the 4th of January 2016. He was such a good boy, he cuddled up to me as they wheeled us through to the waiting area on a hospital bed. He didn’t cry at all. I kissed him and told him how much I love him. I told him to be brave and strong and that we would see him soon. Joel and I both took him into the theatre, and I laid him on the operating table. We held his little hands and gave him one last kiss as he went to sleep. When we left the room Joel held me and I cried harder tha I have ever cried in my life. I knew I had to be strong for my baby boy but I was so scared. A lot of people had sent us messages to see how we were doing which was very kind, but I really didn’t feel like talking to anyone. I don’t remember eating breakfast but I know we did go to get food at some point. I honestly don’t know how I got through those 5 hours that we were away from him, it felt like a lifetime.

We didn’t take a lot of photos while we were in hospital. Looking back, do I wish we had taken more? Maybe. But at the time, I felt sad and scared and I wasn’t sure I wanted to remember my baby boy like that.

Elijah after heart surgery
Elijah after heart surgery
Elijah after heart surgery
Elijah after heart surgery
Elijah in hospital after heart surgery
Elijah recovering after heart surgery

Following Elijah’s surgery we stayed in the hospital for about a week, and during this time I was also made redundant from my job. Elijah then took a further 6 weeks or so to recover from the surgery. He has had many follow-ups, doctors appointments, and reviews since then but I am pleased to say he is doing really well now. Don’t get me wrong, he’s not cured. His heart has been mended. One thing I think people tend to assume is that once someone with CHD has had surgery, they are “cured” or “fixed”. Unfortunately, this is not the case. I think we have been fortunate given Elijah’s CHD was not as severe as other children who may require multiple surgeries at a very young age. We don’t know whether our little boy will need further surgery in the future, all we know is that our little heart warrior is here with us now. And for that, we couldn’t be more grateful.