Coarctation of the Aorta: Manon’s Story

When Manon was born, nobody knew she had a serious heart condition. Her mum, Claire, is forever grateful she followed her instincts when she thought something wasn’t right. This is their story:

Manon was born in June 2021 via elective Caesarean-section. The atmosphere in the theatre was relaxed, the radio was on, everybody was pleasantly talking and joking, it didn’t feel like a major operation.

The music playing when she was born was “Don’t look back in anger” by Oasis, how ironic… She was fine, we went back to the room, got moved to a bigger one, six hours after the C-section I was up and walking (ish).

We were told that we would probably go home the next day. On the Thursday, her temperature was a bit down and she was grunting (sometimes) but apparently it was nothing major. We were discharged home.

I found her to be quite yellow on the Friday, and was told that if I still had concerns, I should take her to a day assessment centre on the Saturday, which I did. She was checked for jaundice, but was ok. She was rechecked on the Monday during the heel prick test. I asked about her cold feet and her colour, but I was told it was quite normal for a baby and she had put on weight so everything was fine.

On the Wednesday she was off her food, on the Thursday she was still off her food and she had a dry nappy after four hours. She was a bit sweaty and blue around her mouth – something was not right, I could feel it.

I felt silly, but I made the call to the hospital. I mentioned group B strep during pregnancy and was told to come to paediatrics straight away. We thought it would be a matter of a few hours, so I sent Paul home with our three year-old daughter, Fleur.

Arriving at the hospital at 7.15pm, they looked at her and she was literally taken away from me… that moment was the beginning of the most traumatic 24 hours of our lives.

I was holding Manon’s hand, but the room started to fill with more and more medical staff, they pushed me to the side, trying to find a vein. She was crying, I was helpless. Suddenly, someone remembered I was there, watching, silently crying. I was pushed out. There must have been three doctors, two consultants and five nurses. I was terrified.

I hadn’t called anyone, not even Paul. I knew it was serious. A doctor finally came in, I could see Manon briefly and there was a cannula in her head. They didn’t know the problem, they were giving her antibiotics, they had called a retrieval team in, they might need to intubate…

I was standing there, needing to breathe and think straight and was gently told to call my family to tell them. What should I say? A senior nurse came in and told me to call Paul. I called, tried to explain, but I couldn’t. The nurse took the phone and said, “You need to come in now, find childcare for your other daughter. Your wife and your baby need you, she has sepsis…”

I heard the tears and suddenly this little voice: “Daddy, Daddy, why are you crying Daddy?” I took the phone back, talked to Paul, I remained calm, blunt, practical. “Get the neighbour, call your mum, come here, text me when you leave”.

I wasn’t sure of the time, trying to keep it together, I didn’t know how I was still standing. The nurse told me I’d done so well to make that call, the doctor kept saying that what happened to Manon was not my fault. They said her reaction to antibiotics was ok, but not good enough.

There were so many doctors and she was so tiny. I wasn’t with her, but I could hear them. I didn’t know what they were saying, but I could see the concern on their faces. The assistant nurse brought me a cup of tea (that made me smile, because a cup of tea is always the answer).

The doctor came back to me and said they needed to intubate her, and that they couldn’t wait for the retrieval team. She was to be intubated on an adult ICU unit with the help of PICU over the phone. I called Paul and said, “You’ll have to make your way straight to ICU.” I was worried for him, having to drive 20 minutes to the hospital in that state.

They put Manon on a little bed and took her to the ICU. I followed the bed with my empty pushchair. We entered the ICU. Someone said, “We need to intubate her now, there’s a risk with that…” I stopped listening and looked at my tiny baby. I wasn’t sure of what was going on anymore.

They took me to a small room, with no windows and no air. Paul entered the room, looked at me and cried. The minutes seemed to be hours and I updated him with what I knew, which wasn’t much.

The consultant came in to give an update. “She’s been intubated, we’re giving fluids, antibiotics, she’s responding.” We were told again that we’d done nothing wrong, that we had made the right call.

The retrieval team from PICU had arrived, to transfer Manon to the children’s hospital by air. We weren’t allowed to go in the ambulance or helicopter because of Covid.

“Is she going to be ok?” I asked.

The doctor looked back at us. “I don’t know,” she said, and my world crumbled again.

The assistant nurse mentioned we hadn’t seen our baby girl. The doctor made a few calls and took us to the ward. It was a shock, she was laying there with the tubes and beeping machines. The retrieval doctor spoke to us and said Manon was stable. She was going to be transferred by ambulance, as another case needed the helicopter.

They started another medicine: prostaglandin. The doctor said that she might have a heart issue, but her liver was also too big. While she was speaking to us, the retrieval nurse found a femoral pulse. The medicine was working. I hung on to this tiny bit of hope, because in that moment, it was the only thing that kept me going. I was crushing Paul’s hand with mine, he was crying.

They moved Manon to a little incubator. I asked if her bear could go in it with her, as I didn’t want her to be alone. Paul gave Manon a kiss. “I can’t kiss her,” I said, “I have a cold sore.” The doctor said, “You can, she has lots of antibiotics already.”

I kissed her and said, “Be strong my baby.”

They closed the incubator and started walking to the ambulance. As the bed disappeared around the corner, my legs started shaking, I needed help to stand. I gritted my teeth, thinking, “I won’t allow myself to cry, I can’t fall apart, she needs me to stay strong”.

We went back to the tiny room, and were offered a coffee. We were then told that when we were ready, we could make our way to PICU at the other hospital. “Take your time and be careful on the road,” they said. Does anyone even realise what we were being asked to do? We were being asked to drive more than an hour, at night, not knowing what was happening to our daughter, not even knowing if she was going to make it…

I wished so hard that I was going to wake up and that it was all a nightmare. We updated our families and made our way to the car. We sat in the car and looked at each other, then we left. We were silent for a while, both of us kept our thoughts to ourselves. Paul broke the silence, “I’m just going to wake up now, aren’t I?”

“There is a tiny bit of hope”, I replied. “We need to hang on to that because she’s strong, she can pull through.” I needed to convince myself. The pain I felt at this moment was indescribable, it hurt so much not to know. It hurt so much to be so close to losing a child.

As we entered the hospital,l I needed to breathe. I could see the queuing system for Covid, which was used during the day, but at night it was completely empty. The hallway was massive, all we could hear was the sound of our shoes. It looked abandoned, it was scary.

We made our way to PICU, but got lost, as the hospital was immense and, to be honest, I wasn’t listening when they gave instructions earlier. We found the door and pressed the button but I was not ready to go in. I wondered what I’d find. I was scared of what we would be told.

The door opened and we walked through. Paul looked at the floor, but I couldn’t help myself from looking around. There were beds with kids in and parents by the side, tubes everywhere and those machines constantly beeping.

We finally got to Manon. She was stable and they were doing an ECHO. The doctor briefly explained that Manon had a heart condition. It wasn’t detected during scans or at her newborn checks. She needed an urgent operation, either that night or in the morning. They were hoping she would be stable enough to wait for the next morning.

We were told we had 24 hour access to PICU, but both of us couldn’t be there at the same time. The nurse showed us to our room, but I didn’t want to sleep, I just felt so helpless and empty. What did I do wrong for her to have a heart problem? The nurse insisted we needed to take care of ourselves, to eat, drink, sleep etc… but how could we? Our precious little baby was laying there with tubes everywhere, so small but so strong.

I finally agreed. We went to the room, updated our families and, as I lay down on this bed, I fell asleep crying.

When I opened my eyes, I wished so hard that I’d be in my bed at home and that this was just the worst nightmare ever. That didn’t happen. I didn’t know the time and wasn’t even sure of the day. The only thing I knew was that I needed to see my baby girl.

The night team was still on shift and the latest news was they would probably operate in the morning. Another doctor came and confirmed a diagnosis of coarctation of the aorta, with a lot of explaining and drawings. I just wanted to know she’d be ok, but that’s the one thing they couldn’t tell me. The truth is brutal, if I hadn’t made that call last night, the conversation with doctors would be different, it would have been a matter of two hours. It struck me that my coping method brought us here, the way I manage my anxiety saved my daughter’s life.

What would have happened if I didn’t make that call? Will that thought haunt me for the rest of my life?

The surgeon was reviewing her case to see what priority she was. With all the tubes and noise, I cried silently. The surgeon came to us, with more drawings and explanations. I blanked, – I wanted to listen but my brain refused. We were asked to read the consent form and sign it. All I could see were the risks. I pride myself on always seeing a positive side, but in that moment I couldn’t.

The morning went by with still no sign of her going to the theatre. We decided to go downstairs to eat something, but suddenly the phone rang. I panicked and Paul answered

“It’s PICU, Manon is ok…” I didn’t know that they always began with that sentence, every time they called.

We went back to the PICU floor and the anaesthetist spoke to us. He explained the procedure. He seemed so confident, he casually saves lives every day. He mentioned that Manon would need a blood transfusion. The wait was on and Manon should be next to surgery. She should have gone in the morning, but more critical patients came in.

The doctors and nurses told us they were going to push for it to happen that day. At 3pm there were still no signs of going anywhere. At 4pm, the little girl who had just had her operation came back from the theatre. All the nurses rushed around. Manon was next. I felt anxious and scared.

At 4.30pm, the anaesthetist came and checked Manon’s sats and medications. She was ready and at 5.00pm the surgeon was too.

Mister Bear was not allowed with her at this time, she was going to be on her own. My tiny girl was so brave, but I wasn’t. I was crying, telling her I loved her, telling her I’d take care of Mister Bear… I put him against my heart, because it was the closest I could have her to me. I decided to hang on to that bear like my life depended on it. It would stay with me until she was out, it was my connection to her.

The surgeon said the operation should last two hours. She was ready and we walked, following the medicalised cot and to the lift. I kissed her one more time. At 5:45pm, the doors of the lift closed. My daughter was in surgery and the most painful wait began. I held Paul’s hand very tight, no words were needed. It was so hard to send your child for life-saving surgery, to put all of your trust in strangers. But I knew they would take care of her, they were heroes.

I knew this would be the longest wait. We needed to keep occupied, but how? The nurse took us to Ronald McDonald house, where we would stay until we could go home.

We decided to go and get some food, but also we need to call Fleur. We hadn’t spoken to her since Paul dropped her with the neighbour last night. Paul’s mum and dad made it to our house within half an hour of Paul dropping her off. She was only three and hopefully she thought it was an adventure. The truth was, I didn’t know what to say to her, I was scared of crying over the phone.

We video called her. “Hi Mummy and Daddy, I’m with Nanny and Grandad!” Then it came, the dreaded question, the one that broke my heart, “Can you show me my baby Mummy? Where is my baby?”

I bit my tongue, took a deep breath, willing myself not to cry. How do you explain to a three year-old that their 8 day-old sister was having life-saving surgery? I have always said I wouldn’t lie to my children, so I explained, “Manon was very poorly, darling girl, her little heart had a scratch, so the kind doctors are now repairing her, so she can come home, but it will take a little while for her to get better. Mummy and Daddy love you very much.”

Her answer was, “Ok, I love you and daddy and my baby.”

Life is simple when you’re three… I knew she’d have more questions later, but at that moment she was happy, so I felt a bit better.

We got food, went back to Ronald McDonald’s house and tried to eat something. The clock didn’t seem to go fast enough. It was 9pm and there was no news. It had been three hours.

At 9.11pm the phone rang. Paul picked it up. “Hi it’s The surgeon, Manon is out, the operation went well…”

The relief… Paul ran to the toilet and threw up, I lay on the bed crying. We just needed to wait for the ward to call us when she was ready and back in PICU.

From that moment, the long journey to recovery started. There were ups and downs, and lots of questions. I have spoken to other mums and dads, they knew what we had been through, even though all stories are different.

I researched Manon’s condition and came across Tiny Tickers. Reading other stories helped me a lot. I decided to find out why Manon’s condition wasn’t picked up. I wrote to PALS and mentioned the pulse oximetry test. I am very happy to say that the hospital where Manon was born is now training midwives to do this test. The hospital also admitted that, if that test had been done on Manon, she would have been diagnosed sooner.

Manon has recovered from her surgery, and I am very happy to say that at her last cardiac check-up we were given the next appointment for six months’ time. While going to those appointments will never be easy for us, I know I can find help in the Tiny Tickers community.

Find out more about coarctation of the aorta and other kinds of congenital heart defects here.