This afternoon we’re sharing Caroline’s experience of her daughter’s arrival at 36 weeks. It’s a real pleasure to introduce you to our first premature baby who celebrates a birthday this week – wishing you a very happy birthday, Charlotte! ♥
My daughter Charlotte has a flair for dramatics. It started even before she was born! She was due to arrive around the 10th December. I expected her to take after me and arrive late but she had other ideas!
I had a difficult pregnancy, with terrible morning sickness throughout and it was during a visit to my GP for anti sickness medication, that issues with my blood pressure were found, leading to my first spell in the ante-natal ward. That stay was short as my blood pressure stabilised and I had to stop working a little earlier than planned.
Short cut to 3 weeks later and I felt awful, dizzy, sick, couldn’t see properly. I was sent to the hospital to be checked out and was almost on my way back home when blood tests came back indicating pre-eclampsia and I was admitted. Back to the ante-natal ward I went.
I got gradually worse until I was taken to the labour ward for monitoring and eventually the decision was taken to deliver – section or induction according to the position. Typically after being breech for 36 weeks, she decided to turn round that day so the decision was taken to induce. I reacted badly and by blood pressure got worse and I started to feel really bad. I couldn’t control my own body and was shaking uncontrollably. The room then filled with people and I don’t remember much.
Once I was stable, it was off to theatre for an emergency section and my daughter was born at 36 weeks gestation and a good weight at 6lbs 7oz. Her AGPAR scores were 9 and 10 and everything seemed fine.
We breathed a great big sigh of relief thinking the worst was over.
But it wasn’t.
A few hours later, my husband noticed she was a bit blue in colour and she was taken off for some oxygen. The paediatrician appeared, listed to her chest, announced she had heart problems and had to go to intensive care. We couldn’t believe it – she seemed fine – nearly full term and normal weight.
She was taken to the neonatal intensive care unit, where she spent the first night being cared for by nurses and doctors and not me. I was no good being given drugs intravenously in a different part of the hospital. The worst part was my arms ached for her. It was a physical pain and 4 years on, I still remember how I felt.
When I did see her in her incubator, I got a bit of a shock. All the tubes, and wires and noise and she seemed so big compared to the other babies in there – like she didn’t belong and shouldn’t be there. I felt guilty that she was taking up a place that a smaller baby might need, guilty that my body had failed her and guilty that I wasn’t able to care for her fully.
That first night, while I tried to recover, my husband had to deal with everything that had happened on his own. Shuttling between our little girl in neonatal intensive care and me on a different floor. Both of us wired up to monitors and drips.
He didn’t tell me until much later, but that night, he was told she had a number of problems breathing and she might not make it. Dad’s get neglected a bit in the whole process. It took him a long time to get over it all.
It turned out that her lungs hadn’t fully developed and she had fluid in one. One lung was working ok but with the strain of doing all the work, she developed a hole, which meant air was leaking into the cavity surrounding her lungs. This was making it even more difficult for her to breathe.
She also couldn’t feed – the strain of feeding and breathing was too much for her and she needed to be tube fed.
I was wheeled up to see her on my hospital bed and one of my first encounters was seeing a nurse arguing with a doctor. He wanted to carry out an invasive and painful procedure that she felt was not needed. I saw her stand for and protect my baby and knew than that I could trust them to do the best for her. We didn’t expect her to be in intensive care so we were completely unprepared for the noise, the lights, the tubes, the wires.
I know it’s a difficult balance to prepare expectant parents and not terrify them, but in any antenatal education the fact that things can go wrong was glossed over. On a tour of the maternity unit, we were whisked past the neonatal unit and it was barely acknowledged. Which makes it all the more shocking when you find yourself in there, getting to grips with the terminology – nasal gastric tubes, long lines, desating, apnoea, cares, blood gases, respiratory distress and so on. Then there are the rules, who can visit and when, when are ward rounds, hand washing, what are the babies allowed around their incubator and planning everything around times and rules.
The neonatal nursing staff were amazing. Reassuring, calm, efficient and considered the whole family.
When your child is in the neonatal unit, you get to know it very well. It becomes like a second home and you spend a lot of time with the staff. I witnessed them caring for very sick little babies, dealing with parents and families with sensitivity – delivering difficult messages, supporting parents and also working with parents to develop the care plan. They made us feel like we were working together to move our baby closer to the door. That’s how progress was measured. The further away from the desk and the closer to the door, the nearer you are to taking your baby home!
The plan involved working down through the oxygen she needed until she could feed properly. I wanted to breastfeed. It was even more important to me as I was doing so little for her. The midwives were great. Helping me hand express colostrum, putting it into tiny syringes, taking it straight to the neonatal unit and reassuring me that the tiny amounts were enough.
Gradually, the amounts of milk she was fed increased, the level of support she needed to breathe reduced and we were able to begin breastfeeding. Again the support and help was fantastic. I had one to one help to get breastfeeding established. The nurses advised me on positioning, latch, keeping her awake to feed as she was still very sleepy and being treated for jaundice. I worried about bonding – would she be more attached to the nurses than me, but I noticed that whenever she was held by me, her stats improved. It was as if she knew that I was her Mummy.
There are no secrets in the neonatal unit. We saw parents arrive high on drugs or drunk. I found it very difficult not to pass judgement. I had done everything right – ate the right foods, avoided alcohol and there we were. How can people do anything while pregnant that might harm their growing child? I’m not proud of feeling like that but I couldn’t help it. On one particular occasion, a father came in, obviously on something and proceeded to wander round, peering in incubators and laughing at the babies. He was thrown out and that gave us insight into the other side of the job – the abusive relatives, caring for babies that will eventually be discharged to less than ideal homes.
Our stay was quite short – only 10 days in all – but it was quite an emotional rollercoaster, through pre-eclampisa, emergency caesarean section, thinking everything was fine to breathing problems and the neonatal intensive care unit. While she was in there, my most treasured possession was a photograph of her.
The other thing that struck me was the reaction of friends and family. While some were great and send cards and presents straight away acknowledging our girl’s birth, others seemed to wait – almost until they knew she wasn’t going to die before buying anything. My own mother said similar, 2 days after giving birth with a baby in intensive care. So if you know someone who has a premature baby – please congratulate them. They have just become parents after all and if they show you any pictures, then all you need to say is that he/she’s beautiful. They don’t need to hear that they’re tiny or scrawny or all shrivelled or any comments on the tubes and wires.
I wanted to share our story as people assume that babies born so close to their due date will be fine and that’s not always true. You find yourself not belonging to the premature baby mums as your child’s journey has been no where near as difficult and not belonging to the full term ones either, as you have the worries and concerns after having a sick baby and you have to consider the impact on their development. You can’t quite compare against full term babies.
But the story ends positively. Charlotte is 4 today. She’s bright, clever, funny, beautiful, caring loves to dance and count and ride her bike to the park, she has a wicked sense of humour and is at her most beautiful when up to mischief. You would never know now that that she had a difficult start to life. We don’t know why I developed pre-eclampsia but I’m incredibly grateful for the amazing care we both received from the NHS. I know it has its problems but we saw the NHS at its best on her birthday.
The beautiful birthday girl
15 million babies are born preterm around the world every year—that’s 1 in 10. More than 1 million babies die due to complications of preterm birth and many of those who survive face a lifetime of disability. Both Tommy’s and Bliss raise funds to help both babies and families who are born prematurely and require special care. You can find more about what they do, or make a donation, by clicking the links provided.
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