This is a pretty heavy subject matter for a blog post but what happened changed me, it changed my outlook on life and it changed the way I think and even the way I feel. I have a need to write about it. So here goes…
On 17th July 2015 at 4.48am I gave birth to my second baby boy, Zaki. I’d had a c-section with my first and I was so chuffed that I’d managed a vaginal birth with 8lb 5 Zaki, mainly because it meant I could go home soon and bask in the post-birth afterglow and mist of love that surrounds you when you’ve just had a baby, and be with my two precious boys. Or so I thought.
Everything seemed fine at first. We took some snaps of our new arrival and texted our nearest and dearest to let them know that he’d arrived.
Zaki took his first feed from me. Not much, hardly anything really. But hey, he’d just been born, he needed a rest, so we let him off. When I attempted another feed around an hour later Zaki wouldn’t wake or attempt to drink at all. Not too worried, I told the midwife who was in the room at the time. She suggested we try with a syringe to get him interested and left the room to get one. It just so happened that there was a doctor outside when she opened the door. She asked him if he’d come to check over Zaki. He hadn’t, but he would do, as he was there. I still wasn’t worried.
The doctor started checking over Zaki and after around a minute shouted outside that he needed help. A midwife rushed in. I started to worry. He told the midwife that Zaki’s sats (oxygen saturation levels) were very low. The midwife replied that they couldn’t be because Zaki was “a good colour” and his machine must be wrong. He tried again with another machine; still very low. He told the midwife to get Zaki to special care immediately. There was absolute panic in his voice. I was crying now.
We found out over the course of the next few hours that Zaki had been born with a congenital heart defect (CHD) called Transposition of the Great Arteries (TGA). I won’t go into too much medical detail (if you want to know more this website explains well) but basically two arteries were in the wrong position and pumping blood to the wrong parts of the body. They needed to be swapped over and a consultant who came in especially to diagnose Zaki told us that if something wasn’t done that day Zaki would die.
Zaki was deteriorating rapidly. He was put into an induced coma and onto a ventilator. The air ambulance was called, and he was flown to Leeds General Infirmary within the first few hours of his life. We couldn’t fly with him, we had to say goodbye, knowing that it might be a forever goodbye. Not knowing if he’d be alive when we saw him again. My heart was broken into a million pieces seeing his tiny body in that pod, knowing there wasn’t a thing I could do to help him. I put my trust in the air ambulance doctors who were amazing at trying to reassure us. They told us he was “very very sick but we’ll do everything we can”. The looks on their faces gave more away than their words though.
We were told that as soon as Zaki got to Leeds a procedure called a balloon septostomy would be performed on him to create a hole in his heart so that the blood could mix and more oxygen would be circulated around his body.
The rest of that day is mostly a blur. My husband and I made our way to Leeds but I don’t remember the journey. I do remember that I googled like mad to try and find out as much as I could about TGA. I’m the kind of person that clings onto statistics, so I was comforted when I read that 90-something percent of babies born with TGA are successfully operated on and go on to live healthy lives with no need for further surgery. Zaki’s case was more complicated, although nobody knew why until the surgeons actually opened his chest and looked at his heart. But if your baby is born with TGA, the chances are, he or she will be fine.
In Zaki’s case we didn’t know that he had TGA before he was born, it wasn’t picked up at his 20 week anomaly scan and apparently around 50% of cases are not picked up pre-natally. If we had known, Zaki would have been born in Leeds, rather than in our local hospital.
Usually the balloon septostomy will buy time for a baby to grow and become strong enough for heart surgery, around 7-10 days after being born. When we arrived in Leeds we were told that the procedure hadn’t improved Zaki’s sats as much as was hoped or as much as it usually would. Sats should be as close to 100 as possible; Zaki’s were in the 60’s. The doctors couldn’t work out why.
The next day was probably the worst because it really hit home what was happening. The doctors couldn’t understand why Zaki was so poorly. A consultant in the Peadiatric Intensive Care Unit (PICU) told me that “Zaki probably wouldn’t survive”. I looked at her blankly. She said it again. I nodded but I didn’t believe her. My brain wouldn’t let me believe her because it knew that if I did I wouldn’t survive.
A few hours later she told us that Zaki was so ill they might have to operate as an emergency that day. It was a Saturday but she had called the surgical team in to discuss whether to operate. She told us that if they didn’t Zaki would probably die but if they did, he was so ill that he would probably die in surgery. I really don’t know how I survived as she was telling me this. I was on autopilot. I was hearing the words but not taking them in. I was responding to her but it wasn’t me speaking. It was decided the doctors would try everything they could think of to improve Zaki’s condition as much as they could and he would be operated on the next day.
Zaki looked so ill that day. His whole body and face were extremely swollen due to the extra fluids that were being pumped into him.
We signed the consent forms. The surgeon and cardiologist spoke to us as length about the operation and the risks. I only heard “death, brain damage, organ failure”. Through my tears I begged the surgeon not to let him die.
We were told the operation would last around 3 hours. It was more like 9. The longest 9 hours of my entire life, it felt like days. Some people go shopping, go for a meal, go to sleep while their baby is in theatre. We couldn’t do any of that. We didn’t eat or drink anything. We were in a daze. My stomach was in knots, I could feel my heart physically aching. The last thing the doctor had told us was that Zaki was in a really vulnerable situation and that we had to prepare ourselves for the worst.
For the majority of the 9 hours we sat in the waiting area of PICU. The doctors had said they’d come and get us as soon as the operation was over. It was excrutiating and when the nurse finally came to tell us the operation was over I was shaking, through anxiety and sheer exhaustion.
We were taken into a room with the surgeon, a cardiologist and a nurse and it was explained to us that upon opening Zaki’s chest they had found that he had TGA and 2 holes in his heart. But what was causing the biggest problem was his coronary artery, which was too narrow; a quarter of the size that it should have been. That’s the reason he had been so sick. The amazing surgeon, Stefano Congiu, the man I admire more than anyone else in the world, had managed to make it bigger but he had no idea how successful the surgery was going to prove to have been. He’d never performed this kind of surgery before and neither had anyone else. Newborn’s hearts are the size of a walnut, the suture the surgeon was stitching with was finer than a strand of my hair. That this kind of surgery can be performed at all is a miracle to me.
The surgeon told us that 1 in 4 babies in this situation would die. I immediately flipped that statistic and replied that that meant that 3 in 4 would survive.
While Zaki was in theatre his heart was stopped and he was put onto a bypass machine (called an ECMO machine) so that the surgeon could operate. The ECMO machine pumps the blood around the body, bypassing the heart and lungs.
We’d been warned that he might come out of theatre still on that life support machine so that his heart and lungs could rest, but he didn’t, which we were told was a very good sign. But it didn’t last. After about 2 hours the doctors asked everyone to leave PICU because they needed to implement theatre conditions to put Zaki back on the ECMO machine. His heart was too weak after the surgery and couldn’t function, so he needed the ECMO machine to do the work for him while he recovered. His surgeon told us that 1 in every 2 babies in this position would die. Again I flipped it and said “yes but that means 50% survive”. The odds don’t sound so bad when you put them like that, do they?
After surgery Zaki’s chest was left open. We were warned that it would be. I could see his poorly heart trying its hardest to beat. Looking around the intensive care bay I could see that none of the other babies or children were in the same situation as Zaki. He was the only one on ECMO, as well as being on a ventilator and an enormous amount of life support drugs. We were told the situation had to be assessed on an hour by hour basis. The number of consultants, registrars, surgeons and nurses caring for Zaki was overwhelming. Each of them really trying their absolute hardest to save my baby. I owe each of them, and the amazing NHS, so much more than I will ever be able to give.
Zaki’s surgeon told us that the maximum number of days he could be on the ECMO machine was 10. After that the blood would start clotting and there were other risks that came with the machine that would become greater, such as organ failure and brain damage. Also, in their experience, if a heart isn’t well enough after 10 days of rest, it’s never going to be. Each morning an ECHO (scan) was done on Zaki’s heart to assess the function. Each day we were told there was a slight improvement and that’s what we clung onto. As I walked down the hospital corridor on my way to PICU each morning I would beg and pray to God that the ECHO showed an improvement.
We were told on several different occasions that Zaki probably wasn’t going to survive and we should prepare ourselves for the worst; that he was deteriorating. But we always kept the belief that he could fight through it. I never once allowed myself to fully process that I might not be taking my baby home to meet his brother. And he was such a fighter, he always bounced back after each set back, his strength gave us strength.
After 5 days on the ECMO machine the doctors decided to try to take Zaki off it. It was another agonising wait, this time for 4 hours. But he came off it and his heart and lungs were now working, his body was working, with the help of a ventilator, a dialysis machine and too many drug infusions to count. I was ecstatic, I started to dare to think about taking my baby home one day soon. That night though, Zaki took a turn for the worse. I stayed with him until 4am when his nurse persuaded me to go and sleep and she would call if there was any change. I didn’t get a call and when I called PICU at 8am they told me that Zaki had started to improve again and was doing much better.
Generally, things improved and improved from there on in. We had a few blips, a few blood transfusions, a few bad blood gas results and changes in medication. But we were starting to slowly relax and daring to believe he would be ok soon. His chest was closed 2 days after being taken off the bypass machine and as the sedatives were reduced he became more alert and opened his beautiful eyes on day 11.
Zaki was still sedated and on a huge amount of morphine, which was gradually being reduced. The next big hurdle was coming off the ventilator and making sure Zaki could breathe for himself without tiring. After a few failed attempts he mastered the breathing thing on day 20, which meant that I could finally hold him!!! I was so happy I thought my heart would burst. I still tear up thinking about that moment he was placed into my arms.
My oldest boy, Omar, only just 2 himself, finally got to meet Zaki when he was transferred to HDU. During the whole time Zaki was in hospital Omar stayed with my parents while my husband and I stayed in a house on hospital grounds for families of sick children. The Sick Children’s Trust relies on charitable donations to run the houses and it was a godsend. I missed Omar so so so much and felt unbelievably guilty for leaving him but leaving Zaki wasn’t an option.
After one week on the cardiology ward Zaki was transferred to our local hospital to be weaned off morphine and oxygen and establish feeding.
I had been expressing milk since Zaki was born but my neglected and stressed-out body couldn’t make enough by week 5, so he was having formula top-ups. Because he was sedated for so long Zaki had lost his sucking reflex though, so he was being tube fed. There was talk of Zaki being discharged with oxygen canisters and his feeding tube still in situ but in the end he needed none of that. He started to take his feeds from a bottle, ditched the oxygen and exactly 6 weeks after he was born, on day 42, we went home.
It wasn’t all plain sailing once we got home. Zaki was prescribed (what seemed like) all the medicine in the world. It took me an age to prepare and administer it three times a day. He also had an undiagnosed cow’s milk protein allergy and vomited every single one of his feeds. Omar was confused and annoyed about being left for so long and I bore the brunt of it. Plus I was constantly (and I mean constantly) checking that Zaki was breathing and not blue.
Things have settled down a lot now. Omar loves me again and Zaki only takes two medicines a day. He’s also on hypoallergenic formula and gaining weight well. He had an appointment with his cardiologist this week, who was very pleased with his heart function and how he presented.
Neither Omar nor Zaki will remember those 6 weeks of hell when they’re older, thank goodness, but I can honestly say I’ll never be over it. Sometimes I look back and wonder how I got through the days. I think about the other children that were in PICU over the weeks. The boy that was brain damaged during his surgery, the baby that didn’t make it after her surgery, the 11 year old girl that had such a rare type of cancer nothing was known about it and her mother’s wails as she died.
Me and my baby were lucky. I’ll never stop counting my blessings and I’ll never ever stop championing the NHS for saving my baby’s life.