Mum Jasmine tells us,
“Rhodi was born on 7 January 2024, weighing 7lb 8oz. He was a much-wanted son to myself and my husband, and a baby brother to big sister Dollie.
I was induced with Rhodi, and my waters were broken. During the pushing stage, I noticed that he had passed meconium, which, due to my work on a neonatal unit, I knew wasn’t a great sign. The consultant scanned me and informed me that Rhodi was coming down sideways, and his heart rate remained high. I was prepared for a forceps delivery, and if that failed, a caesarean section.
Rhodi was born at 16.32, when he came out he wasn’t crying so required a bit of stimulation. I questioned the neonatal nurse and raised concerns as he was born in meconium but was advised that he was okay. During my night stay in hospital Rhodi only had 2 sets of observations and I raised concerns about him crying in the night but I was told “he’s just hungry”. I didn’t feel that this was the case however I listened and trusted their expertise.
We were discharged home the following day. We had numerous check ups in our local hospital where again I raised concerns about his feeding but also his colour as he looked jaundice, they advised that he didn’t meet treatment level so it should clear. During the visits I also mentioned how his poo had not changed as with my daughter by day 3 her poo was what they call a korma colour yet Rhodi’s was still meconium again this was shrugged off.
Sunday morning at 5:30, Rhodi fed, but he was really unsettled and wouldn’t go back to sleep in his crib, which he normally would. So, I had him on my chest where he settled, and I stayed up. I woke him for his feed at 8:30, but he wouldn’t take it; he kept clamping his mouth shut. He would wake but only for short periods.
In the morning, I called my local hospital because he was due for a check-up at 13:30. I asked if I could come in early because I was concerned he wasn’t feeding despite my efforts to wake him up. However, I was told to come in at the normal time as they would only try everything I had been doing.
When we arrived, I noticed he started to grunt, so I caught this on video just in case I was questioned. We expressed that something was wrong, and we were about to be sent home, where Rhodi would have died of a cardiac arrest. I told them he was grunting, but they looked at me like I didn’t know what I was talking about. So, I showed them the video. The midwife then checked his heart rate and said it was high, so she was going to call the larger hospital for us to be seen. If we hadn’t pushed for this, he would have died at home.
When we arrived, someone was waiting for us. Normally, it’s so busy that you have to wait a long time to be seen. We were taken to a room, but we were there for only 30 seconds before being moved to the resuscitation area. By this point, my husband and I were panicking. Rhodi was no longer responding to pain; when they were trying to insert a cannula, he didn’t flinch. We heard them throwing around the words “group B Strep” and “sepsis.”
I was asked multiple times if I was positive, to which I said no. I had no idea what this meant and assumed that if I was positive, it would have been picked up on a blood test. We were asked to leave the room while they intubated him, and I knew what they meant by this, so I went into panic mode. When we were allowed back in, there were ten consultants from different teams gathering around our baby, trying to “figure out” what was wrong.
We were told that he needed to go to a Level 3 hospital for the PICU (Paediatric Intensive Care Unit), and we were filled with dread. We travelled to the next hospital by ambulance, where we had to wait for them to stabilize him in his bay. He looked so puffy due to all the fluids he had. The following day, they advised that they were taking him for a CT scan to assess the extent of brain damage we were facing. We waited patiently for what seemed like forever before we heard, “Can we talk in a quiet room?” We knew it wasn’t good news.
The words “Your son has unsurvivable brain damage” left the mouth of the consultant. Our world came crashing down around us. We were left with the decision no parent should have to make: When do we turn off his life support?
We informed our family and friends who travelled the hour drive to come and say their first hello and last goodbye to our beautiful baby boy. Dollie arrived the next day, where she asked what was wrong with “baby brother.” I had to explain that he was too poorly and that he was going to heaven. Dollie, a smart nearly 3-year-old, understood well. She told us, “I don’t want you to send him to heaven; I want him here.” Our hearts continued to break, not only for us but also for her. She painted Rhodi’s hands and printed them onto paper, giving her brother one last cuddle. The play team created some incredible memories of Rhodi for us to cherish.
Once Dollie had left, we made a plan with the consultant regarding when to withdraw his care. Our perfect Rhodi grew his angel wings on 17 January, 2024, at 18:30. This tragedy could have been prevented if GBS testing had been offered to all pregnant women*. Now, we must navigate life without our child.
*There are no known ways of preventing late-onset GBS infections (7-90 days) although one day a vaccine should do this, so speedy identification of the signs of these infections and urgent escalation are vital for early diagnosis and treatment.