“Trust your instincts, but also have faith in our wonderful NHS” - Rachel’s #FullTermFeelings

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For Full Term Awareness Month, Rachel shares her story of having a baby born full term but sick. Her daughter Mila needed treatment for persistent pulmonary hypertension of the new born (PPHN).

Mila was our second baby – her birth was fairly quick and very straightforward. In fact, it was exactly how I had wished.

I was having mild contractions whilst putting our three-year-old to bed and went to hospital around 11pm, giving birth at 2:20am in the pool with no interventions.

Everything went so well that we were preparing to go home by lunchtime. I sent my husband home around 5am so that he could get a couple of hours of sleep and our son would wake up with him there. I tried to rest knowing the first night at home is always tough for feeding.

As I did with my son, I was planning to breastfeed, so Mila was latching on every hour or so. I noticed that her breathing had started to be quite noisy and she was grunting, but she didn’t seem breathless particularly – I mentioned to the midwife who agreed but also didn’t seem concerned.

Mila was due to have her newborn examination test before going home. Ours was completed by a lovely midwife, who agreed that her breathing was noisy but thought it was possibly a blocked nose, as her chest was clear and her oxygen levels were good.

I had a gut feeling that something wasn’t right, and I still wasn’t reassured and asked for a paediatrician to review before we went home. The first paediatrician agreed and admitted us to the ward overnight so she could be monitored. She was going to ask her senior to review Mila too.

There was no panic or rushing around - everything seemed quite calm. I thought Mila was maybe a little mucousy and hoped this would clear in a couple of days.

I told my husband who was just about to leave home to come back in. The senior paediatrician arrived to review her and within 30 seconds of examining her, made the decision to take her around to NICU.

I can’t remember the conversation exactly as it all happened very fast, but she said that she thought my baby was struggling to breathe more than we first thought. She added that I should give her a quick kiss and a cuddle, but they were going to take her to NICU and would come back to me once she was in her incubator.

It’s all a bit of a blur now, but I remember my heart sinking, feeling nauseous and a million thoughts racing. I dressed Mila back in her baby grow as tears fell, which now seems silly as I knew they were going to take her baby grow straight off again, but I was on autopilot.

The midwife left to update the team, I imagine and get the notes, so I was left alone. They had taken my baby.

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I sobbed and phoned my husband, who was in the car on the way to take us home - the last thing he had heard was that we might be staying overnight. It had all happened so fast; I had the endorphins from a great birth to having the rug pulled from under me and my baby being really poorly.

Once we were allowed to see her my heart broke. Mila was in the incubator in a head box with oxygen and she was crying and rooting. My instincts told me to pick her up and feed her but of course I couldn’t. The alarms were beeping, her oxygen levels dropping – I knew this as I was an adult nurse myself.

The doctor decided to put her in the prone position, facing down, which can help the lungs expand. Because she was full term and a good weight, she didn’t like this and was crying, which wasn’t helping the breathing issues.

They decided to intubate, sedate and put central lines into her belly button where the umbilical cord is.

I could see her deteriorating in front of me and I thought she might die. The team were trying to explain things to us but they were also busy saving her life - I was very emotional from the trauma of it all, as well as the hormones and exhaustion from labouring overnight.

The heart scan confirmed what the consultant thought they were treating her for – persistent pulmonary hypertension of the new born (PPHN).

Mila had taken her breath and had a good cry but her lungs had not opened up properly and she had started to struggle shortly after birth. The consultant said we had had a lucky escape: Mila was sent round to the NICU at six hours old and many PPHN babies arrive via ambulance around 12 hours old. We would have been at home by then with our three-year-old son.

The first night was really hard. I felt so detached from my baby, unable to hold her and worried about her health. I stayed with her for as long as I could before the nurse kindly told me to try and rest as Mila was sedated. I needed to express breast milk anyway and needed my strength for when she was awake.

I went up to the ward in the middle of the night, trying to eat, express and sleep. My husband had gone home around teatime to keep some normality for our son so I was alone. The NICU nurses were lovely and really helped me to stay positive and grounded and not get ahead of myself with the what-ifs.

Mila was responding well to the treatment so far. But by morning, her oxygen requirements had gone up and I was worried about her deteriorating – however the consultant reassured me again. Her lungs had opened up and they were planning on waking her up and trying to take the breathing tube out.

That night she was extubated and by the following night she was feeding at the breast. Her progress was staggering – not uncommon for neonates, unbeknown to me.

By day three we were being admitted to the ward to continue with her IV antibiotics and to monitor her feeding. We finally made it home a week after she was born and she continued to thrive, so much so that you wouldn’t even know that she had been so poorly. We are waiting for the results of a follow up heart scan but she currently has no ongoing symptoms and is reaching all her developmental milestones so far.

My advice is to always trust your instincts and have faith in our wonderful NHS. The doctors and nurses see this every day and so are highly skilled, but also know the impact on families and are very supportive.

Some specialist nurses take care of family members, offer reassurance, and decode the complexities of the medical jargon.

It was them who signposted me to Bliss – their website alone provided comfort and I enjoyed reading the stories. I’m hoping our story can provide some comfort or reassurance for other parents who have experienced something similar, particularly as ours has a happy ending.

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