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My baby's life-threatening Strep B infection that triggered SEPSIS - Anna Santos-Witkowska

 

On June 20th 2019 at 12:30am I lost my show and began very early stages of labour. I had mild contractions until around 5:30am, at which point they stopped. At 7:30am I called the hospital as I couldn’t feel much movement from my baby. They called me in and monitored me for 1.5 hours. We found the heartbeat but the doctor saw me and said he’d like to induce me that day at 15:30pm. I was told to go home and return at 15:30pm as that would be when my bed would be ready. 

 

At 11:30am my waters broke so I came back into hospital early. I was put in a bed in a room with 4 other women, all of us in early stages of labour. Throughout my pregnancy, I had always been told that, once your water breaks, the delivery should be induced to ensure the baby is out by maximum 18 hours. I was kept on the ward for 34 hours before I was taken to the delivery suite to be induced, despite the fact that I was supposed to be induced on 20th June. I kept on being told that they were short staffed and therefore I couldn’t be taken down to delivery. I was told that the gas canisters were empty so I was given limited pain killers and I was at no point being cared for in a way in which I would expect someone in labour to be looked after.

 

Once my baby was born, we found out that he had his chord wrapped around himself several times which meant he had reduced movement. Around 4 hours after he was born I began to feel very unnerved and felt that something wasn’t right with my baby. I called for the midwife to come back in and she said that it was because he needed his nappy changed. She changed him and then left again. I continued to notice that my baby seemed very uncomfortable and I started to notice that he was pulling an unusual face. I called her in again and insisted that he was checked over again. After about 5 minutes, she called in another midwife and the two of them observed him for a bit longer. After a little while, they called in a doctor who came and observed him for another 10 minutes. Throughout this time, I was terrified and couldn’t believe that there was really something wrong. The doctor said that he was going to have to take my baby, my husband went with him and had to wait to be told that I was allowed to go. 

 

When I went down to see my son, he was in an incubator with several tubes attached to him. It was awful, I saw my husband crying and I had no idea what was happening.

 

We spoke to the consultant who explained that my son, Oliver, had many forms of infection. He had pneumonia, a collapsed lung, septicaemia, a kidney infection, a liver infection and needed a lumbar puncture to check for meningitis as he had negative cultures showing in his blood. Hearing this terrified us even further, we weren’t sure whether or not we’d be coming home with a baby, and it was by far the worst moment of my life. We were handed a leaflet about GBS and told that this was the reason for all of the problems.

 

I had never heard of this and reading the leaflet made me worry even more. Since coming home, I have researched Group B Strep (GBS) as much as possible and want to do everything I can to teach others about it.

 

25% of women carry the infection, there are no signs or symptoms and it doesn’t cause the carrier any problems. The infection is passed on during delivery and develops in the baby very quickly. I was so lucky that my mother’s intuition kicked in as we managed to catch the infection before it caused any permanent damage. 

 

Every week, 1 baby dies and 1 baby is left with severe brain damage as a result of Strep B. England is one of the only countries to not routinely screen for the infection. A woman can have a totally healthy baby throughout the whole pregnancy and in a matter of hours everything can change. It is totally preventable as all that needs to be done is the mum given an antibiotic during her labour, or opt for a c-section. There is a £39 test that pregnant women can do at around 38 weeks pregnant which says whether or not they carry the infection. 

 

What shocks me the most is not only that we are not routinely screened, but that we aren’t even told about the infection. If I had been told about the infection then I am 100% sure that I would have ordered the test myself in order to not risk the awful outcomes.

 

If we could find a way to ensure all mothers-to-be have routine screenings then that would be amazing. However, for now, I just want to raise awareness of this infection and do everything I can to stop babies dying and becoming severely brain damaged as a result. 

 

I had such a hard time recovering from everything and have suffered with panic attacks and ptsd. I am very lucky to have family and friends who have supported me and helped me get back to being myself. For the first 5 weeks of my sons life I was terrified of anything happening to him and kept finding things to worry about. After feeling so let down by the NHS, I never felt that I could go to them as I couldn’t face being dismissed again. I was very lucky as 1 midwife noticed that I was worrying a lot and said that she wouldn’t allow them to discharge me form their care until she felt I was better. She visited me at home a few times before discharging me. I continued to have my nerves, anxieties and panics, but a lot less than I had initially. 

 

Along with spreading Strep B awareness, I want to help any new mums with their worries. I think that I had every worry and panic possible and I think that by letting others know what I worried about will help them feel more normal without feeling that they are going mad. 

 

I really hope that you can help me spread the word, share my story and raise Strep B awareness. 

 

A couple of weeks ago, I was back in hospital because Oliver had some seizures. I immediately thought that it was either epilepsy, as my husband in epileptic, or from the Group B Streptococcus.

 

When the ambulance came, the paramedics had never heard of it. When the doctor, at the hospital, was told about Oliver’s history, I heard him say “what’s GBS?”

 

This just shows that even medical professionals aren’t educated enough on it.

 

I felt relieved when we got told we could bring him home. The whole time we were told it would either be 7 or 10 days. I was allowed to stay in hospital as I was trying to establish breastfeeding. Whenever my husband would leave, I would cry because I was scared. When we got home, it felt surreal. It felt as though we’d been in hospital for months. It was quite overwhelming and daunting. We were called by the midwife, 2 days after returning, and told to come back in because they were too short staffed to do a home visit. I felt sick, I didn’t want to go back after the way they’d treated me initially. Not the neonatal ward, they were lovely, but the midwives weren’t. 

 

I was so happy to be home but I was also so scared and crying a lot. I was lucky to have my family around me to support me because I had no medical support whatsoever. I was crying everyday and I was so worried that something would go wrong and I would lose Olly.

 

A week after being home, my husband actually had to go into hospital for a week to be monitored as he has epilepsy. That was really tough but I had my mum and sister staying with me, so had help.

 

Oliver has no lingering conditions, which is incredibly lucky! But I really could have benefited from extra care in order to help me settle my fears. I was so scared that his lungs weren’t fully fixed, or that they had missed something, that I couldn’t enjoy the time with my baby. Now, when I look back at that time, I really can’t remember my beautiful newborn baby as much I can remember how scared and sad I felt.

 

The moment I found the Group B Streptococcus support charity, I found something new to focus on. I stopped letting the negativity and worries take over, I used that all to work as hard as I could to stop other women and babies from being out in the same position, or worse ones.

 

No, but that was one of the things that crossed my mind. That happened a few weeks ago and it was again that feeling of total terror. He was monitored for 24 hours but the consultant said that it was most likely something called Sandifers, which is essentially reflux. The first doctor said she thought it could either be sandifers or some missed damage as a result of meningitis through Strep B. He didn’t have any brain scans however, he shows no signs of any brain damage and is where he should be developmentally.

 

When I think back to that time it is all still so mind boggling! Throughout my whole pregnancy, I was told that if my waters break then the baby must come out by a maximum of 18 hours, as after that time the chances of infection are much higher. It never even crossed my mind to ask what infection and no one ever said anymore than that. I don’t know if Oliver would’ve still contracted Strep B had I not had to wait 39 hours!

 

I then think about how none of the midwives cared to reassure me, before I’d had him, they just told me they were short staffed and there was nothing they could do. 

 

Thank god that the staff on the neonatal unit seem to actually care about their patients and helped save Oliver’s life.

 

As I have researched Strep B so much since our experience, I just can’t believe it’s not spoken about or prevented! It’s effecting people far too often to be ignored - I just don’t understand why.