Mum Kerry says:
My pregnancy was going very well. I’ m a Type One diabetic and had ulcerative colitis. The hospital had regular appointments to monitor me and baby Jacob. The hospital wanted to start an induction at 36 weeks due to his size and I was starting to show symptoms of colitis flare. I asked to wait a week as I wanted to be as close to 38 weeks.
During this appointment I asked what group B Strep was. It had been mentioned to my partner by someone he knew as their child had been born with group B Strep and they told us to make sure we asked. We mentioned it to the hospital – they told us not to worry and said the NHS did not routinely test for group B Strep.
The hospital said they would be able to pick it up in labour and give me antibiotics, and a swab would be done if I had thrush. The nurse in the room and the doctor told me a test would not change anything. Sometimes I really hate myself for listening to them, they did not mention about a private test or give us any information.
Giving birth
I was around 35 weeks pregnant at this stage. At 37 weeks and one day I went into hospital. This was the day our lives changed on 9th November 2021. I was induced and went into labour very fast. I was having very strong contractions within one hour. The hospital doctor actually stopped the labour as they said it was happening too fast. This was when they told me I had thrush.
They later started my induction again. When I was not progressing enough, they used a hormone drip and broke my waters with a balloon method.
My waters did break not long after. I went on to have an epidural as I could not get along with gas and air. It was during my epidural they noticed Jacob’s heart rate had slowed down. They made the decision to take me for an emergency c-section.
After they removed the epidural and gave me a spinal injection, I started to feel very unwell and told them I could not stop shaking. They told me I had a temperature and they needed to get the baby out quick. My partner and the nurse had to hold me down during the c-section. They offered to take photos of the procedure for me. When Jacob was born, he was crying but within a minute or two they had to start resuscitation. When he was breathing again, they put him on antibiotics and a ventilator.
Jacob was in the special baby unit and my partner kept checking on him for me. I was feeling too unwell to go and see him. When my spinal injection eased off they got me a wheelchair to go and sit with Jacob. Due to Covid they sent my partner home. This was very stressful for me as without him I couldn’t get down to see Jacob.
As sick as a baby can get
Later in the night they called my partner back as Jacob had deteriorated and explained he needed to go to another hospital. They told us he was ‘as sick as a baby can get’ and they had called Derriford Hospital to take him. At this point they asked if we had thought about having Jacob christened.
This was the hardest thing to hear as we realised things were looking very bad. We called a priest to come to Jacob’s bedside. They christened Jacob and said some prayers. At the same time the doctors from Derriford Hospital arrived – they told us he was too sick to go with them and would not survive the journey. There was so much going on and we were so upset.
Torbay Hospital then contacted Bristol Children’s Hospital who looked for a referral for Extracorporeal Membrane Oxygenation (ECMO) treatment. We didn’t even know what this was. At one point they mentioned going to Glasgow. We were told that Great Ormond Street Children’s Hospital (GOSH) had a bed and a machine available. They arranged for a helicopter to bring the Children’s Acute Transport Service (C.A.T.S) team to collect him.
They had to take Jacob by ambulance to Broadsands where the helicopter would take off from. My partner went with him as I was not able to leave the hospital yet. The hospital tried to get me a transfer to UCLA hospital in London, but this was refused.
After Jacob had left in the air ambulance with his dad the hospital told me to discharge myself. The midwife told me about UCLA hospital and said I was to go there as soon as I felt unwell. They said I needed to be with my baby as they could see how stressed I was. I had not even got to hold him yet.
GOSH
I managed to get to GOSH where I saw Jacob for around 10 minutes. When I arrived, he was already on the ECMO machine and sedated. I was there for 10 minutes, before my partner had to call an ambulance for me to go to UCLA because I was feeling very unwell. I had to stay at UCLA hospital for a couple of days and did not get to see my son. My partner travelled between each hospital every single day to check I was okay, and our baby was too. The treatment was bad at UCLA as they did not seem to understand about my diabetes and the pump I was on. I left to travel to GOSH where doctors told us they didn’t know what Jacob‘s life was going to look like and it was a possibility that he didn’t have any brain action. They also said he needed to have a chest drain and this was very dangerous on ECMO.
Everything was so scary. A lot happened during the next two weeks. They wanted to take Jacob for a CT scan while he was on ECMO, they had a big team of doctors and nurses to help move him. I remember them saying there was 21 people involved. Another day we walked in and the bay was cornered off and there was someone waiting to talk to us. I was crying before I even got to them – I thought he had died.
After that I didn’t want to leave his bedside. We were there every night until midnight and back first thing in the morning. Jacob had to have two chest drains in because they couldn’t get air to his lungs. This has left him with pretty major scarring to his body.
Life-saving operation
Jacob had an x-ray on his lungs every day and nothing was getting better. He had an operation to try and close the hole in his lung – it was a very risky procedure but the only chance we had of Jacob surviving. The doctor was called Nagarajan Muthialu.
This to me is the man who saved Jacob’s life. Shortly after the operation Jacob’s lungs started to show signs of air and no leaking.
After 14 days, the time came to take Jacob off ECMO and he responded really well. They talked about arranging for me and my partner to have our first cuddle. I was very scared, as he still had a lot of wires and tubes in. I didn’t want to put him back in his bed. It felt like we were starting to turn a corner and Jacob was going to make a recovery. He was moved to another unit in the hospital where they discussed moving him to a hospital closer to home.
We talked about Southampton and Bristol. These were hospitals which could provide the care he needed and close to where we had family to stay with. Jacob made such a fast recovery from ECMO we ended up being able to return to Torbay Hospital and not a specialist hospital. The journey was not over though. Jacob left with the C.A.T.S team back to Devon.
Spiking heart rate calls for ice baths
When we arrived at Bristol I had a call from Torbay Hospital asking us to get there ASAP – they wouldn’t tell us why. We both went into panic mode. Two hours later we arrived; Jacob had started to have Supraventricular Tachycardia (SVT) and his heart rate shot up to 220 BPM. They used ice to shock his heart rate back down. I felt we had left GOSH too early. After being in a hospital with two nurses at his bed every day it was a shock to come back to one where he was in ICU with one nurse to two babies in the ward. A doctor told us they wanted to start a medication to reduce the SVT and he would stay in ICU. After showing no sign of SVT in 24 hours they moved him to his own room, but I felt this was too soon.
Not long after this, Jacob’s heart rate went to 220 BPM again and alarms were going off. The doctors quickly rushed in with ice and I had to shock Jacob’s head with it. It worked, but he was very, very upset and screaming. They then moved him back to ICU for two days and he started propranolol for his heart. The hospital were also giving Jacob painful fragmin injections for the bleed on his brain and a blood clot they found. We got to give Jacob his first bath in Torbay Hospital. He was not happy about that! However, it felt like we were getting to do the normal things new parents get to experience.
Home at last
Jacob was discharged from hospital on 23December 2021. Before we could be discharged me and my partner had to be shown how to do CPR on a baby,
trained to give Jacob his fragmin injections and how to use a feeding tube for his milk and medications. I really wanted to breastfeed Jacob, but he had to use the feeding tube. Jacob visited the hospital for several weeks having on-going blood tests and x-rays, and we started to see a physio to help with his movements.
Ongoing issues and lasting impact
To this day, it’s not stopped. We must still visit the hospital for appointments. Jacob needed to have an eye operation when he was one and is waiting to be seen again for additional problems. Not long ago, Jacob was coughing up blood and has required heart scans and visits to the ear, nose and throat department. If this continues, he will be going back to Bristol Children’s Hospital for further monitoring. He’s been walking for nearly a year but still struggles with his mobility. I feel like we are the luckiest parents.
Jacob is only here today because of the excellent care he received. On the other side, I feel this could have all been avoided if I was given the correct information and not fobbed off. I had a meeting with the hospital about Jacob’s birth. They promised they had learnt from their lessons and would advise people of group B Strep and how to get tested. However, since our experience I’ve had several friends who’ve had babies and still not received the relevant information.
Group B Strep changed our lives. It upset us and our family, and caused a lot of stress – I still find it difficult and have flashbacks to our time at GOSH. We missed out on a lot of experiences, like breastfeeding as he needed nasogastric (NG) nose-to-stomach feeding tubes, and we didn’t get to hold him after he was born. Friends and family were not allowed to visit due to Covid so support was limited. It’s taken away any confidence we had to have another baby.
