My baby’s heart defects: Zach’s Story

At my twenty-week scan, we were told there was something not right with Zach’s heart. The sonographer referred us to Fetal Medicine in our local hospital.

The Fetal Medicine consultant agreed with the original sonographer that something wasn’t right. They thought that Zach perhaps had a hole in his heart. A VSD (Vertical Septal Defect.)

We were referred to the Harris Birthright Centre at King’s College Hospital in Dulwich.

At the Harris Birthright Centre we met the consultant in Fetal and Paediatric Cardiology. After a forty-five-minute scan, she confirmed that there was indeed something wrong with our little one’s heart. She sat with us and explained that there was a ‘high suspicion’ of aortic coarctation, a VSD and a slightly smaller left ventricle. She drew us a diagram that showed a narrowing of the aorta and a smaller ventricle. The narrow section is like a straw that has been twisted, it makes the blood being able to flow through almost impossible. The left side of the heart was described as ‘smaller but adequate’ meaning that it shouldn’t cause any problems to Zach. The VSD is a hole between the lower sections of the heart. It allows the blood from either side to ‘mix.’

The doctor explained that Zach would need surgery when he was born. He would need open-heart bypass surgery to reconstruct the arch, the narrow section of the aorta. The VSD and the smaller left side seemed ok at that time. We were told that statistically, Zach had a greater than 95% chance of having a successful surgery and going on to live a happy and fulfilling life.

Myself and Emmanuel sat in a small room with a box of tissues and really talked out what all of this would mean to all of us. What came out of that discussion was that ‘we have to give him a chance.’ Zach deserved for us to give him everything we possibly can so that he can thrive. When the research student came in to check on us, she asked us the questions about terminating the pregnancy and about further genetic testing.

We declined the testing; it made no difference to us and we told her that we were 1 million per cent carrying on with the pregnancy. I will never forget that little room and having to have that conversation, but it is so important to talk about everything. I am so glad that we did.

The remaining months of the pregnancy felt like they dragged on. I stopped working and started my maternity leave earlier than planned as I really couldn’t focus any more. I was also feeling really drained. I started focusing on setting up the nursery and getting everything organised. By Christmas 2019 I had everything sorted. Zach wasn’t due until late February!

In January we attended the Echo antenatal class at St Thomas’ Hospital. It was one week after going to the antenatal class at our local hospital. The experiences were very different, but it was worth going to both. A lot of what was spoken about at the Echo class applied to us. The details of the
induction and the role-play of a caesarean section helped me to visualise what my birth experience was going to be like. It was around this point I started to feel ‘different’ from other mums. Even my local midwives had no idea how to deal with me. They would ask me questions about my birth plan and I had to explain time and again that I was being induced at 39 weeks at St Thomas’ Hospital as my baby had a heart defect. I started to loath going for my local appointments.

The appointments at St Thomas’ Hospital were great. The support from the midwife team was amazing. It was a stark contrast.

39 weeks rolled around; I mean I rolled around by 39 weeks. Zach was breech. So, I had four ECV attempts to try and turn him so that I could have a natural birth.

He didn’t turn. I was admitted into St Thomas’ for a planned caesarean section. This was the last thing I wanted but actually, it was a better experience than I thought it would be. Hearing Zach cry as he was lifted out of me was the most beautiful moment of my life thus far. Emmanuel told me ‘well done’ and kissed me goodbye before he went with Zach to the NICU (Neonatal Intensive Care Unit). I was left alone to be stitched
up and recover.

Zach was in the NICU for two days before moving to the HDU (High Dependency Unit.) He was given Prostaglandin. This is a hormone drug that would keep the ‘duct’ open in his heart so the blood could pump through that pathway and not have to try and go through the restriction in the aorta.
This diversion is how blood is pumped around when babies are in utero. The hormone drug enabled this to continue as long as he was on it. He had a cannula put in his hand to administer the drug and fluids.

It was horrible holding my son for the first time with all of the wires and lines attached to him. He had pinprick marks all over his hands were the doctors had attempted many cannulas. When I held him in my arms for the first time, I looked past all of that. He was just my beautiful baby boy.
My darling Zachary.

Zach did really well on the Prostin (Prostaglandin) hormone and was very stable. He was moved over to the Savannah ward in the Evelina Hospital on Friday afternoon. He was born on the Tuesday.

Savannah was a world apart from the peace of the NICU. We called it ‘the wild wild west’ or ‘the jungle’.

Zach presented a conundrum to his doctors. He had a large ASD (Atrial Septal Defect.) A hole in his heart between the left and the right side. They could reconstruct the arch to create a wider aorta. However, they were unsure whether they needed to close the ASD. If they did it would put a lot of pressure on the left side of Zach’s heart. This could potentially cause more problems if this side did not perform adequately. The ASD was acting as a release value and allowing blood to flow back to the right side, or to ‘shunt’ back.

Eventually, nine days after Zach was born the decision was made to operate on just the coarctation and to leave the ASD.

This was all the unknown for us. We had expected an operation but not the ten-day wait. I was starting to lose my footing at this point. Of course, being hormonal after birth doesn’t help. I was trying to take in all of the medical terms at the same time as dealing with my own recovery. It was hard.

However, it was made easier by having Emmanuel and my family’s support first of all. Secondly having the Ronald McDonald House to stay in. I would go there in the afternoon to catch up on some sleep, whilst Emmanuel stayed on the ward with Zach. I would come back in the evening ready to start my ‘night shift.’ Just like any new parents, we had to navigate the sleepless nights, the nappy changes and the feeding, but in this bizarre hospital world this added an extra layer of pressure.

Day ten came and as I sat with a breast pump attached to me, Zach’s surgeon arrived. He was calm and collected, breezing onto the ward. He sat down with me and explained exactly what he was going to do. He asked me if I had any questions, which I didn’t. I signed the consent form and asked
him to take care of my baby for me. As he walked away, I burst into tears. I looked over at sweet Zach sleeping soundly whilst I held a piece of paper that said I had just consented to a stranger cutting open his tiny body. Worst of all it said that he could die. He could bleed, he could suffer all of these other complications. I also knew that he couldn’t live here forever. He had to have the operation.

Emmanuel arrived and we discussed everything and how we felt. We sat and cuddled Zach all morning.

When the time came to go to theatre Emmanuel carried him and a nurse carried his Prostin infusion line machine next to them. I walked alongside them both. Zach just gazed at his daddy the whole walk to theatre. He was so peaceful. We said a very tear-filled goodbye to him in the anaesthetic
administration room. I held his hand as he fell asleep. As we left, I fell apart.

Emmanuel held me and together we slowly walked back to the ward. It was a relief for him to finally be having the surgery but it was the scariest thing I have ever had to do.

We went back to Ronald McDonald House and cuddled up in bed to sleep for a few hours. I woke up to my phone ringing. It was Zach’s surgeon. He told us that the operation had been a success and he was now going to PICU (Paediatric Intensive Care Unit.) We got ourselves together and practically
ran over to the hospital.

Seeing Zach laying there looking lifeless with the tubes and a huge wound
on his chest was unsettling but not as bad as I thought it would be. He was just sleeping very soundly. We sat by his side and held his hand. His nurse explained all of the various tubes and wires to us in detail.

The next three days Zach was slowly brought round from his medications. He was annoyed! Of course, he was in pain and uncomfortable and he let us know the best that he could. It was heartbreaking not to be able to just pick him up and cuddle him. I did everything I could so he knew I was there. I sat with him for fourteen hours a day most days. Then switched with Emmanuel so that Zac only had a few hours of the day to be by himself. I didn’t want him to feel alone.

The next two weeks become very blurry. Things looked at first as if there were going well, however the hole in Zach’s heart was not performing how the doctors expected. His heart was having to beat faster and faster to get enough blood around his body. He struggled so much when he came off the
ventilator that he was put onto CPAP (Continuous Positive Airway Pressure.) He had to wear a little mask with a tube on it that attached to his nose. He hated it! After a few more days he seemed to be doing better so he came off the CPAP.

Then I opened his nappy one day to see a pool of blood. It was what they called NEC (Necrotising Enterocolitis.) In short, his intestines weren’t receiving enough oxygenated blood after his bypass surgery. This happens as the body has a priority list of organs that needs feeding after the stopping and restarting of bodily functions due to the bypass surgery. High on the list are the brain, the heart and the lungs. The intestines are much further down the list and so part of the intestine ‘dies’ leaving a wound that can become infected. He was given three different types of antibiotics and put onto TPN (Total Parental Nutrition) two days later. The TPN is food in a molecular form that goes directly into the bloodstream.

On top of this Zach was struggling to breathe on his own. He was re-intubated. Put back on the ventilation machine. I was in pieces during this time. I was exhausted and sore for sitting in uncomfortable chairs all day long. I was getting a few hours of sleep at best. The worst part was not knowing what was going to happen.

The nurses on PICU were amazing. The doctors were equally excellent. Their spirits helped me and Emmanuel get through some of the toughest days of our lives. At the time it didn’t feel like this. I always dreaded the staff hand over in case it was a person that I didn’t like. Looking back, they truly were all amazing. I was just so on edge that the change of person could make or break my day. I never wanted to leave Zach. The nurses had to send me off to get food. Even when Zach was re- intubated or had a second-long line put into his arm. I stayed. I told the doctor I would stay out of the way but that I wanted to be there.

They got so used to this that I ended up becoming involved. I would hold Zach’s hand and let them know if he looked like he was waking up and needed more sedation medication. I watched his heart rate on the monitor and told them if it was going up. I am sure they just let me do these things to make me feel better, but it worked. I needed to be with him.

Zach was not improving and so the decision was made to operate again. This time to partially close the ASD. Just as his scar had healed, they cut him open again and this time the surgeon went into his heart.

In PICU there are beds by the staff area and reception at the front. This is the area for children who have just had surgery. Then you sort of move around the bed spaces until you get further away from this area and eventually leave PICU for a high dependency area of the hospital, in our case – back to Savannah ward. We used to joke that it was a conveyor belt, the closer to the exit you get the closer to being back on the ward. We had made it all the way to bed seven when Zach went for his second surgery. We started on bed four. When he came out this time, we were in bed three. We had in many forms taken a step backwards. It felt like giant backflip into stinging nettles.

By this point, we were so settled into the PICU world that it was just another space. Myself and Emmanuel talked about the different bed spaces, the window view and the temperature. It’s funny how things soon become normal.

Zach started to recover after his second surgery. This time he did make improvements. He started to come through and show us himself again. He cried when his nappy was dirty. He cried for comfort and milk. He was looking more and more like a normal baby again. I took charge of all his cares. I did everything the nurses would let me. If they had have let me, I would have put on a pair of blue gloves and removed his dressing myself. I leaned on them for support as a new mother and as a parent with a recovering baby. Emmanuel and I often found ourselves deep in conversations with the nurses and doctors. The normality that gave us helped us get through each hour.

I was expressing milk every two to three hours during this time. It always made me laugh when I whipped out my little portable expressing pump called an ‘Elvie’ and the nurses were fascinated by the gadget. It made expressing on the ward easier and it was a talking point.

Slowly Zach was getting there, but one day I was so exhausted that I left Emmanuel to it and went for a rest. When I came back, Emmanuel and the nurse explained that Zach was just not settled at all. His heart was beating fast but not overly. Something was wrong but they could not figure out
what. The nurse checked and tried everything she could think of. After exhausting a long list of things, one of the last things she tried was to do an ECG (Electrocardiogram).

The nurse and the doctor completed an ECG, which involves lots of little stickers and wires that read all the various areas of the heart’s beats. This was analysed by the doctors. We were then told that due to the surgery Zach had an arrhythmia. The electrical signals in the heart had been disturbed when they cut into it. It would need time to sort itself out. During that time Zach would need to be given a beta- blocker drug to slow his heart down. With one dose of propranolol, Zach’s heart was down to 110. That is a very good rate for a baby. Before his second surgery, it had risen to 180 at times!

With the propanol, Zach did improve. We finally made it around the bed spaces and closer to Savannah. On bed number five we were told that evening we would be going to the ward. This was just as the coronavirus news was breaking. Everything was becoming tense within the hospital.
Nurses would disappear off for their ‘fit’ training. To have their masks fitted in case they were needed on the coronavirus wards. It was all very scary but all we could focus on was Zach.

We said goodbye to the other parents in the neighbouring beds that we had made friends with and made our way to the Savannah ward. This time I was ready for the wildness. This time my son was post-operation and on the mend. The nurses greeted us as if we were a travelling family back from
holiday. It was lovely to be able to sleep on the ward next to Zach again. Exhausting but amazing. He was weaned off the TPN and his milk feeds were increased. He was given my expressed milk via his feeding tube. Around 21ml at first to ensure he could digest it. The nurse did his observations and gave him his tube feeds but other than that the rest was up to us.

It became a whirlwind of nappy changes and feeding schedules. I felt like a ‘proper’ mummy for the first time. I learnt quickly that I was terrible at knowing the time. The nurse would appear with his milk ready for a feed and I was thinking that I had only just fed him. One morning a wonderful nurse said to us we can take him off the monitors for some time if you would like. I glowed with happiness as I walked around the ward with my baby. For the very first time, I held my baby without anything attached to him. (Except a feeding tube.)

Myself and Emmanuel sat in the parent’s room on the ward making some food together. I was holding Zach as we chatted and it felt somewhat normal. ‘You look like the cat who got the cream,’ he said to me. And I was. I felt like I had my son back.

After an Echo scan, we were given the all-clear that Zach could be left off his heart monitors. I connected him back at night just for my peace of mind. During the day I fed him and cuddled him and took a thousand pictures. On the day of my birthday, we were given a private room to ourselves as I needed to ‘establish feeding.’ It was the best birthday present ever. I had a full twenty-four hours in that room with just me, Emmanuel and Zach and lots of breastfeeding. We had a lot of issues with his feeding due to a tongue tie that was left untreated. That, however, is another story itself.

On the 25th March, 36 days after Zach was born, we left the Evelina Hospital and went to our local hospital to continue feeding. Zach was severely underweight by this point and needed supervision whilst we fed him back up again. I was one step closer to taking my son home. I finally came home with him on Monday the 30th of March. I practically walked out of the hospital and discharged myself by that point. The UK had gone into lockdown due to the virus and Emmanuel was not allowed on the ward with me. I spent five days in a room with no windows breastfeeding a struggling Zach. I needed my home and I needed Emmanuel.

Coming home was amazing. I filmed Emmanuel carrying Zach up the stairs to our flat. Zach was looking around his eyes just taking everything in. We gave him the tour of his bedroom and the living room. We got out the baby bath and gave him his first every proper bath. He was so skinny and small
but we didn’t even notice that. It was just a joy to be a family at home together.

There were many times in the hospital when I felt as though we would never get there. Like a dark tunnel that I just couldn’t see the end of. But we did. We finally made it out to and into the real world. Fast forward to now and Zach is a happy baby. He brings me more joy than I thought possible.

My advice would be, talk to the counsellors. Make friends with other parents. Pack a few different pairs of comfortable shoes. Take lots of comfortable and loose clothes. A few jumpers too. Take a backpack to carry things back and forth from Ronald McDonald House to the hospital. Talk to the nurses. Talk to the doctors. Find some moments of normality within the hospital bubble. Expect things to change. Expect it to be hard, but it does get better and it is 100 per cent worth it.

If you would like to read my story in full please check out my blog at www.graciousmummyblog.com. where I tell Zach’s story in much greater detail. All of the highs and lows and the little thing that nobody tells you about. I found these stories such a comfort to read when I was sat next to Zach in PICU. I have loved being able to write about his story and share it in the same way. I hope it brings you a small amount of comfort. If you have any questions you can also contact me via Instagram @avagraceofficial.

Has your baby got a heart defect? Access information and support here.