“Miracles can happen” - Rishi’s story

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When Rishi’s son Reyan was born at full-term, he did not expect the journey that lay ahead. Rishi hopes that his story will offer a glimmer of hope to other parents with a baby in neonatal care.

I used to spend every night reading stories here, over and over again. Some positive, some totally heartbreaking. I’d cling to the fact that maybe one day I’d be able to share our story and it would be a positive one. So here goes…

Our case was very complex, and if I were to go through all the details, I’d be able to very easily write a book (but with a one-year-old who has just learnt to walk, that will have to wait!)

Reyan was born on his due date on 12 December 2021. We had a pretty smooth, low-risk pregnancy. The only slight concern was that he was measuring big for my wife’s size. As a result, we had extra scans in the lead up to his birth, but we were reassured there was nothing to be concerned about.

My wife started to experience contractions at around 10pm the night before. They started to come in very strong and were quite close together! The pain became unbearable very quickly, so we were asked to come into the labour ward (at Leicester General Hospital). They explained, however, that it was likely we’d be sent home as it was too soon after the contractions had started.

Once we arrived they saw the distress my wife was in. They placed her in a labour room and attempted to manage her pain and slow down the speed of the contractions. Her contractions quickly gained momentum and Reyan's heart rate kept dropping every single time. This went on for a while.

At around 4.45am, the midwife did a sweep and found that my wife hadn’t dilated very much at all. She proceeded to break her waters and found meconium. No further action was taken and we were told this was normal. A few hours later, the team noticed swelling around Reyan's head. Given this, the fact that the labour wasn’t progressing and that his heart rate kept dropping with every contraction, they spoke to us about a c-section.

Reyan was delivered at around 11.14am, but was immediately taken away. We were told his breathing was a little ‘sluggish’ but that he was totally fine and he’d be with us shortly. Due to Covid-19 concerns at the time, I was unable to be present during the c-section, and was anxiously waiting in our labour room.

A couple of hours later, as we shared the wonderful news of Reyan’s arrival with our friends and family, our elation quickly turned into a horrendous nightmare! It felt like an out-of-body experience, like our hearts had been ripped out. I still experience the trauma to this day.

A specialist doctor who had rushed over from Leicester Royal Infirmary came in and delivered the devastating news - Reyan's lungs were really badly damaged from the excessive amounts of meconium that he had ingested.

She told us that there was a significant period of time during which Reyan was unable to breathe and as a result, his brain had been starved of oxygen. She also said that, in the unlikely circumstance of him surviving, he was showing signs of brain damage.

We were told Reyan would be transferred to Leicester Royal Infirmary that night to receive ECMO (extracorporeal membrane oxygenation) treatment. At this point I still hadn’t had a chance to see him, but due to how poorly he was, they couldn’t take any chances.

During the next 72 hours, communication with the doctors was limited. We had one call the following day from the doctor looking after him. I still remember it as if it was yesterday. We were told our baby boy was ‘really sick’ and that we had to ‘be prepared’ that he may not make it.

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My wife was still recovering from her c-section at Leicester General, so we were left not really knowing what was happening with Reyan, but held on to the fact that no news was good news…

Finally, after the longest couple of days of our lives, we were able to see Reyan. When I finally met him, he was still on ECMO and was in the care of the most wonderful team to whom I will forever be grateful. He received ECMO treatment for three days. During this time we found out that Reyan had to be resuscitated when he was born and that he received a head cooling treatment for 22 hours to preserve his brain functionality.

Thankfully, the ECMO treatment worked and Reyan’s lungs were slowly healing and he was now able to breathe with the help of a ventilator. But he wasn’t out of danger just yet.

We were given the official diagnosis of what Reyan had suffered: meconium aspiration syndrome (MAS), persistent pulmonary hypertension of the newborn (PPHN) and hypoxic ischaemic encephalopathy (HIE).

Over the next couple of weeks, Reyan spent his time in ITU and the NICU - his lungs were healing and his breathing was improving day by day. He was eventually taken off the ventilator and was supported with oxygen. After 11 days they also undertook CT scans of his brain and thankfully, to our enormous relief, the results came back showing no signs of damage.

His reliance on oxygen was slowly reducing and eventually, the day we were waiting for came and he was finally breathing on his own - I can confidently say that receiving the results of the scans and the day he was breathing for himself, was the best day of my life. After all of the pain, it felt like things were starting to fall into place.

After around four weeks in hospital, we were told we could take our beautiful baby boy home! We won’t fully know the long-term effects of everything he went through until later in his life, but so far he has hit all of his milestones - we are the proudest parents.

A formal HSIB investigation later took place and found several errors were made during his labour, and that Reyan’s case was preventable. Receiving the report was and still is heartbreaking and left us feeling numb, but the purpose of this blog isn’t to speak about what went wrong.

We hope that by sharing Reyan’s story, it might offer a glimmer of hope that miracles can happen. Stories like these were a lifeline to me and if this helps just one person to get through the dark times, then it is so worth it.

I think about what happened to Reyan every single day. Why did it happen? What if the catalogue of errors hadn’t happened? What would we have done without him? Why were we the lucky ones with a positive story? But at the same time, it has made me appreciate and cherish every part of him and every moment with him. He’s given me a clear purpose in life.

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