“I’ve never known a heartbreak like it” - Toni’s #FullTermFeelings

Toni 1

For Full Term Awareness Month, Toni shares her advice to other parents who have had a baby born full-term but sick. After a great pregnancy, her son Leon was born needing neonatal care, and was diagnosed with Group B Strep.

In October 2022, I had my third baby, Leon. He was born just under two weeks early as I had gestational diabetes and he had dropped centiles on his growth scan.

Apart from this and a scare of preterm labour at 27 weeks, my pregnancy had been really easy, with no indication of what was to come.

After a tough induction, Leon was born at 1:54pm. He seemed like such a relaxed baby, but looking back, this should have been a warning sign to me.

As the day progressed, he didn't seem interested in feeding and by midnight, I noticed he was grunting (something I had heard a lot of in the gestational diabetes Facebook group).

I asked the midwives to check him and they thought it was to do with wind and bowel movements. They said they would monitor it, so I was reassured and I dozed off to sleep.

The next thing I knew, the monitor was alarming. The neonatal doctors came and monitored Leon for a bit before taking him to NICU.

I had to sit in the ward and wait until I could see him, with a huge gap next to my bed where his cot had been and hearing all the other moms with their babies. After what felt like the longest two hours, I got to see him and I was shocked to see my little baby in his incubator, attached to all these wires and I remember bursting into tears.

Leon had lots of blood tests and blood cultures taken and was started straight away on antibiotics. Then he was put on high flow oxygen, a feeding tube and a drip.

I was told he just needed some help getting fluid off his lungs and the antibiotics were just a precaution in case of an infection, and that he would be able to re-join me on the ward soon.

Unfortunately, the blood cultures showed it was an infection and I was discharged without him the next day; I sobbed the whole day.

I visited Leon every day while my eldest daughter was at school and my husband had our youngest daughter as he was on paternity leave. It was tough because it took two bus journeys of over an hour to get to the hospital and then I had to get back home to make sure my girls got time with me too. They found it really hard as well.

Being on the neonatal unit was such a surreal experience and it felt like a second home. We spoke to another set of parents daily and even though we didn't swap contact details, I still think about them and hope they are coping well.

I'm so grateful that Leon was started on those antibiotics straight away, because when we had the diagnosis four days after of Group B Strep Sepsis, he was already on the right treatment and he was close to finishing his fight against it.

Toni 2

Leon was discharged when he was a week old and we were over the moon to take him home to be with his two sisters, who were desperate to cuddle him. I couldn't believe how much he had been through in that week (lumbar puncture, chest x-ray, countless blood gasses and blood tests and feeding through a tube), and how strong he had been.

Unfortunately, six days later he was readmitted to hospital, this time on the children’s ward where blood work showed he had the same Group B Strep again. He was there for 12 days and given antibiotics.

On the twelfth day, they were struggling to get a cannula in. After the fourth attempt failed, they decided to use a muscular injection to deliver his last antibiotic doses. He needed the injection once a day, so he was discharged home but had to return to hospital for three more days.

Leon seems to be doing really well now, but they do want to monitor him until he is at least a year old because he had Group B Strep twice.

In terms of advice, it was really tough, especially as we already had children at home too.

My biggest tips for parents are:

1) Ask for help and accept all offers of help. We didn't expect our family and friends to offer as much help as they did and it meant that we had childcare so my husband could come to the hospital too and lifts to make sure we weren't always waiting around for buses.

2) Talk to people about how you feel. Me and my husband talked a lot about our feelings and it made us feel better to know we weren't alone in our feelings. I still clearly remember us both talking about how guilty we felt when we were home and smiling and we both told each other it was ok to be happy around our girls.

3) Always ask if you don't understand something. The nurses were especially helpful when explaining things that I wasn't sure on and at times, we were told lots of information, so it always helped to ask.

4) Try and take time for yourself. I learnt the hard way that I can't split myself apart to be in multiple places and as hard as it is, making sure I had moments to myself (often listening to music on the bus), made me feel a little more normal.

I am just so grateful to all the staff who were there for us at some of our hardest moments. I have never known a heartache like it; it was so hard having to split my time in two places and no matter where I was, I felt really guilty, but the staff were really understanding.

If you're worried about Group B Strep, the charity Group B Strep Support are here to help you. They provide detailed information on their website, as well as a helpline and peer support groups.