“We almost lost him to RSV” - Harriett’s Story

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Stanley was born at 27 weeks and spent 53 days in NICU. Harriett was so happy to bring him home, but her world was turned upside down nine days later when Stanley caught RSV.

We were blessed with a beautiful baby boy on 17 September 2017 at 4.13 am. At 27 weeks (12 weeks earlier than expected), and after natural labour, we were delighted and shocked when Stanley William Jackson arrived into the world weighing three pounds. He had a head full of hair and was perfect.

We had been told that Stanley was measuring on the larger side and that I was carrying extra fluid, but no indication that he would enter the world so early. So, when I had felt slightly damp on the Friday afternoon, we didn’t think anything was majorly wrong.

The next day I began to get cramps which then woke me at 2 am as they were getting more intense. We contacted the midwife at Broomfield Hospital who advised that I should make my way to the hospital to be checked over. We arrived at 3:43 am.

Having been quickly undressed and placed on a bed in the labour ward, I was advised that my baby boy’s head was visible and I was in labour. The pain was horrendous and I did scream the ward down. With no time for any pain relief and having to quickly be taught the breathing exercises, our perfect baby boy was born 30 minutes after parking our car.

Our first thought was: why has this happened to us?

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Stanley was transferred round to the Neonatal Unit at Broomfield where the amazing staff soon set about stabilising him. The midwife, Freya, was such a massive support to both of us during my labour. She took the very first photo I will forever cherish of my beautiful son. I was finally allowed to see my son for myself a whole 14 hours after he was born.

Over those first few weeks, we began to understand how each machine functions and what it meant when numbers go up or down. The specialist team of consultants and nurses at Broomfield worked tirelessly to ensure Stanley received the best care. Their care and commitment astounded us, and the love and kindness they showed to our family was unwavering. The nurses within the unit did not just help our baby boy, but they also provided us so much support from a shoulder to cry on, to a place to rest when things weren’t good.

If it wasn’t for the nurses knowing our son so well and knowing when he wasn’t right, the potential longline infection when he was eleven days old would not have been caught in time. Nor would he have recovered so well when he stopped breathing at three weeks old and had to be ventilated. We experienced some good days and some horrible days which felt like utter hell. We learned so much since being welcomed by not just the staff, but also the other parents in the unit. We have been lucky enough to walk away knowing that we have made some real friends during our time there.

Though every second feels like a minute and every hour feels like a day, we have learnt not to take things for granted; to appreciate every breath, not to fuss and fight about things that don’t really matter. Most importantly tell those important to us how much happiness they bring to our lives and how much we love them.

We have been blessed with Stanley earlier than we expected and funny enough we would not change a thing. We are getting to watch our beautiful, headstrong miracle grow every day. He may be little, but as the nurses found out especially his favourites Jackie, Sally, Debbie, Lauren, Jo, Lucy and Alice, he has a massive personality. He loved nothing more than to wait until they had left the room or check on another baby to set off his alarms to remind them all he was there.

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After 53 days we finally got to take our miracle home. Like any new parents, we had sleepless nights trying to get into the routine that our son dictated. Unfortunately, after nine days at home on 17 November 2017, Stanley stopped breathing in my arms. Luckily for us, we were at Broomfield Hospital for a check-up. I managed to sound the alarm and start CPR, which I was taught prior to leaving the NICU, before the doctors and crash team arrived to resuscitate him. I couldn’t stop screaming – I was so terrified.

They eventually stabilised him and placed him on the ventilator seven hours later. Due to how poorly Stanley was Broomfield were unable to care for him and in the early hours of Saturday morning, he was moved by the CATS Team (Children’s Acute Transport Service) to Addenbrooke’s Paediatric Intensive Care Unit. Both Ian and I were placed in hospital accommodation which is offered by The Sick Children’s Trust.

They confirmed that he had RSV (Respiratory Syncytial Virus) which caused infection of the lungs and breathing passages. He also had a clot in his left leg from where they tried to place a central line and had his third blood transfusion. Prior to going through it myself, I had never heard about RSV and I’m still shocked at how little people still know about this horrible illness. Our world was turned upside down because of what we witnessed our son go through.

To say our world fell apart is an understatement, but he is a fighter and did pull through. We eventually got our little boy home on his due date 10 December 2017. We had to continue to inject him with medication to help thin the blood clot but was given the all-clear that the blood clot had disintegrated on 5 January 2018. We still had several hospital visits to go including a visit this week to Great Ormond Street as Stanley has hypospadias, meaning the opening to his penis is in the wrong place. He also will require surgery for his hernia and hydrocele, which occurred when fluid fills a sac in the scrotum of the penis.

He is now four years old and cannot wait to start school in September. No matter what he always smiles, and I am the luckiest mummy in the world. I am still struggling to come to terms with what we have gone through especially when he stopped breathing in my arms, and I do cry a lot. Since his discharge in December 2017, we have had many readmissions to the Phoenix Ward (including being blue lighted) due to Stanley’s breathing. When the pandemic arrived I was terrified as to how this could affect him as RSV had almost killed him.

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Thankfully we have managed to get through the last two years without contracting the virus. However, since lockdown has lifted his chest is getting worse again with a hospital visit only two weeks prior to Christmas. I’m awake this morning due to him having trouble breathing and coughing. The doctors believe he will grow out of it. Though four years on, we may now have fewer visits, but the sleepless night and flashbacks I have are still as real as ever. I often say to my family, it’s not NICU that affected me - that was a home away from a home. It was more what happened in November and watching the life drain out of my son because of RSV. I have found that there isn’t much support for parents who almost lose their children and have PTSD. I know I struggle and put on a brave face and act like I’m okay - it has really changed how I have raised Stanley.

I’m so scared it may happen again, and I continue to watch and monitor his breathing. It has, I believe, made me a better mum, but it has also stopped me from ever becoming a mummy again.

Ride the wave, deal with it as it comes – if you think that your baby isn’t right, trust your gut.