“We tried to be as involved as we could be” - Shanice’s story

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Shanice’s baby boy Jeremiah-John was born at 28 weeks. Since his birth, he has fought through Hydrops Fetalis as well as various other medical conditions but is now happy, healthy and at home.

Listen to Shanice's story

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I attended the hospital at 27 weeks initially for reduced movements, but after a few hours of monitoring they sent me home, saying that my gestation was too early to say if it was reduced movements or just that he was still able to “hide”. The following Saturday, when I was 28+1 I attended again for reduced movements but this time they took it a bit more seriously.

The traces weren’t coming back very good and indicated his movements were slowing down, and my urine showed a lot of protein. They decided to keep me in overnight with suspected preeclampsia.

The following morning at 6 am they resumed monitoring and the tone really changed. Initially just one midwife was in the room watching the monitoring traces, then she went to get another, and another… Then the doctors came in too. With visible concern on their faces they explained they were moving me to the labour ward whilst they made the decision on whether he might have to come early.

Following more worrying traces they ordered me an emergency scan, and within 20 minutes of reviewing the scan they had me in theatre. It took three surgeons and 15 spinal block needles to numb me and finally get my baby boy out. Jeremiah-John was born at 11:31 am on 23 January 2022 weighing just 790g.

He was wrapped into a plastic bag and taken into a separate room where a team were waiting to stabilise him. We didn’t even know he was out until a nurse asked my partner if he’d like to see him before they took him to the NICU ward.

I was taken to a recovery ward where other c-section mums were with their babies – it was such a traumatising time - until around 10 pm when I was transferred to the Jessops Wing with Jeremiah-John not far behind me. I finally met him at 11:30 pm the same evening and was absolutely besotted, I’ve never felt a love like it.

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The following day we met the consultants and doctors who were looking after him. We were greeted with the words “your baby is very sick”, which didn’t resonate quite as much as it should’ve, as we still thought at this stage that it was just preeclampsia that had caused this. They explained that he was suffering from Hydrops Fetalis, a condition that causes abnormal fluid accumulation in two or more foetal compartments.

He also had low amniotic fluid around him - an uncommon combination. Hydrops Fetalis affects 1 in 1000 babies, with only 20% of babies found to have it during pregnancy surviving birth. Hydrops never acts alone, so to speak, and the babies suffering with tend to have a lot of other issues that come with it.

Jeremiah-John was ventilated for 14 days before being transferred to a CPAP machine. While being ventilated, he was given phototherapy for jaundice. He was taken off of TPN around the same time as his ventilator, but unfortunately the time he was on it meant he’s been left with long term jaundice.

We had countless infection scares, low haemoglobin, increased and decreased medication levels, new medication, trial and error after trial and error, blood transfusions and recurring worries over his survival. His heart scan showed two large holes, a PDA and PFO. His brain scan showed two bleeds. It felt never ending at a stage.

We didn’t get to hold him until day eight. It took a team of four or five nurses to arrange it. He had so many medication pumps that they were lined up and stacked in his incubator.

After the ventilator, things would improve but more steps back would then be taken. It felt like an hour was an entire day with how quick things could change. Another huge issue was his feeding - every time we would feed him he would desaturate and have a bradycardia; he would recover and go into another, over and over.

These episodes would occur up to 18 times a day, with the episodes including four to eight sets of desaturations and bradycardias. It was so scary watching them turn his oxygen to 100% just so he could safely recover himself.

We tried being as involved as we could be so he knew who we were and that he had some gentle loving hands in the midst of all the pain.

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We finally got him to high flow breathing support at week four, but a few days later after some really intense desaturation and bradycardia episodes. An x-ray was ordered that showed an accumulation of fluid on his chest, so he had to go back to BIPAP support, which filled his stomach with air and continued his episodes.

Trying to find a comfortable balance of enough support for him to recover, but at a gentle enough pace that it didn’t cause another issue, felt impossible during that time. However, it suddenly felt like things perked up overnight and his pumps were all gone, he was back on high flow and we even made it to Jessops HDU before being transferred to a hospital closer to home.

He has survived his hydrops, he has pushed through with chronic lung disease, he has fought off infection after infection, he has closed one hole in his heart completely and the second was now only 1.5mm, his brain bleeds showed signs of clotting and there are now no new light areas are showing. His liver still needs an eye on, but it isn’t causing any problems right now.

Jeremiah-John is now 11 weeks old, 4lbs and an alert, happy baby. We’ve had a little hiccup here and there - not gaining weight, losing weight, inability to exclusively bottle feed. But patience has proven to be a virtue and he is now happy at home with us.