Nesta's Story

told by mum Olivia


The CHF Think Heart campaign really hit home because we had no idea of our son’s critical heart condition.

I had a completely healthy pregnancy; I attended my midwife appointments and the anatomy scan. We were told his heart was healthy and nothing in the scans raised any concerns.

I decided to freebirth my son Nesta at home with just my husband present. The birth was magical with our two-year-old daughter also watching the whole event.

Midwives came out in the afternoon and checked Nesta over, they listened to his heart, and everything was wonderful. Nesta latched on straight away and seemed so healthy.

When Nesta was seven days old he went to the hospital for his new-born hearing test and passed with no problems. When asked, I said that I had no feeding concerns and that Nesta was generally well.

The following Tuesday when Nesta was eight days old we noticed he was quite sleepy, more than usual. But we didn’t worry about it, because after all he was a newborn and babies sleep a lot. Later that evening after putting my daughter to bed I lay with my son on my chest, after a while it dawned on me that he was breathing extremely fast.

I Googled the words ‘why is my baby breathing so fast?’ and read that a baby’s resting breaths should be anywhere between 30-60 per minute. Nesta’s breathing was so fast that I couldn’t even keep up the counting, it was over 100 breaths per minute. I took him downstairs to my husband and said, “I don’t like his breathing”, my husband told me not to worry but I was sure that something wasn’t right. We rang the midwife line first, but there was no reply, so we rang 111.

I said that I had an eight-day old baby who was breathing extremely fast – at least 100 breaths a minute. The operator asked me his last name and why he wasn’t registered with the NHS. I explained I gave birth at home and kept stressing how fast he was breathing. The operator kept repeating “are you sure you are spelling his name correctly? I can’t find him.” as his breathing grew continually faster.

My husband hung up and we called 999 and explained our situation. We were informed that an ambulance would be with us within three hours. This was reassuring as we were able to explain the situation and there did not seem to be any urgency, for a moment it was almost comforting. Then suddenly the baby let out such a loud scream which was unlike him, something just felt horrible as he continued to scream, so we said, “we need someone here now”.

The paramedics showed up within minutes.

There was a senior paramedic, another paramedic and a student. They could see how worried we were getting but they quickly reassured us that he looked “absolutely healthy and fine”. The senior paramedic said, “There’s nothing to worry about as with any breathing problems in babies you always see a sucking in motion in their chest or throat.” and Nesta didn’t have the sucking in motion. “He is absolutely fine” were the exact words. The paramedics couldn’t test his oxygen saturation levels (sats) as they hadn’t come equipped with an infant sats probe, they tried to use an adult one which didn’t work as it was picking up the pulse of the paramedic trying to hold it in place.

Nesta then projectile vomited which was the first time he ever vomited. The paramedics still weren’t concerned and were laughing and joking with us about various irrelevant things. They said that because he was under two-years, that we were advised to go to A&E as a precaution.

I rushed to get our bags ready and was told to “calm down” and “not rush” as once again, “he’s absolutely fine”. When we got in the ambulance, the team caught up with work on their tablets while my son was in the car seat breathing extremely fast, there was still no urgency whatsoever.

On arrival I sat in the A&E waiting area just smiling at my baby and feeding him. I was sure at this point that it was going to be a pointless quick trip as I’d been told.

Within ten minutes I was escorted to another waiting area where someone tested Nesta’s oxygen saturation, he was in the high 70s, they wafted oxygen over his face, but the numbers just weren’t increasing at all.

This was all so new; I had no idea what a sats test was or what anything meant. Suddenly we were taken through to the resus room where they lay Nesta on the bed and held oxygen over his face, I was told to phone my husband because I needed him. I was thinking “why do I need my husband, what is going on with my son?” I rang my husband, who had to wait for my mother to arrive at the house to look after our daughter.

I watched the team do all manner of things to my baby. They were trying to find a vein for a cannula, they said that he might have an infection and that they couldn’t find a vein, they had to drill a hole into his shin to get some medication into him as soon as possible. My husband arrived and it was horrible for us to see what was happening.

After two to three hours, we were taken into a room and told that they suspected it was a heart condition. We were told Nesta needed to be transferred from the hospital in Derby to the heart centre at Leicester.

Nesta needed to be stabilised, put to sleep and ventilated to prepare him for the transfer. We were told his condition was serious and that he might not even survive the journey to Leicester. We couldn’t travel in the ambulance with Nesta as there was no room. Instead, we travelled in our own car arriving at the hospital with the ambulance. I remember running up to the little incubator pod Nesta was in and seeing the doctors putting their thumbs up and saying that he was still stable.

I looked at his face, he looked like he was smiling at me. Even though Nesta was asleep and on a ventilator etc he really looked like he was saying “Mum what’s the problem? I made it to where I need to be, I’m stable!”

He’s such a little fighter…

At around 6.00 am we saw Nesta in the paediatric intensive care unit and when the consultants’ shift started, he was given a CT scan which showed that he had infracardiac TAPVD. He needed emergency open heart surgery to repair the condition, hopefully there would be no further complications.

We were feeling so scared and broken, but when we met the surgeon Mr Ikenna Omeje, he just looked at us and smiled. He said, “I feel very confident I can fix his heart and he will be fine.” Those words were like bliss. Just hearing that and seeing a smile was everything to us.

Nesta had his open-heart surgery that evening at 6.00 pm. It lasted four hours and we just held each other, praying, singing songs, waiting so eagerly. After the surgery was finished Mr Omeje came to our room and told us how successful it had been and how well behaved Nesta had been – he’s amazing!

It was now just the road to recovery.

My thoughts on what happened

Nesta’s particular condition is largely undetectable by scans in pregnancy, so I don’t feel there was anything further that could’ve been done at the ante-natal stage.

After surgery we read Nesta’s report which said his oxygen levels were 78% on arrival at hospital. If only they had done a pulse oximetry test for oxygen saturation, at the hearing test, the day before they would have seen his sats levels were low and admitted him then. The panic and emergency could have been avoided.

If I could implement something to address this problem, it would be that at some point around five to seven days after birth a pulse oximetry test is taken as a standard procedure. I wish the paramedics had been aware of the signs of heart conditions in babies, they didn’t even count his breath rate. A baby taking over 90 breaths a minute should be an instant concern because it can be a sign of an underlying hear condition. The paramedic team just focused on it being a breathing problem and ruled out anything being seriously wrong because Nesta didn’t have a sucking motion in his chest.








All people concerned with the health of young babies should be aware of  the Think Heart Campaign.


If you have been affected by any of the issues raised in this content you can contact or 0300 561 0065.

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