Guest Blog by Tracy Burkinshaw, who describes her journey with baby Lincoln – one size doesn’t fit all.
Whenever I tell people that my son was premature, the first thing they want to know is how much he weighed. They never expect the answer to be “7lbs 8oz” and usually they respond to this revelation with “oh, you must have gotten your dates wrong!” or “he must have been ready to come!” or, my personal favourite ” you’re lucky that you didn’t go full term!”. The truth is, he may have been a gigantic preemie, but he was still premature and he still suffered for it.
Lincoln was born at exactly 34 weeks gestation. We’d known for a while that things weren’t exactly going to plan; my diabetes wasn’t behaving which meant that he was growing bigger and bigger by the day, he also stopped moving towards the end. I was admitted to hospital at 33 weeks when my consultant uttered the words that no parent wants to hear “we may not have a live birth if we wait much longer”.
My son was delivered via caesarean section two days later. He came out crying which was a truly wonderful sound, but things started going downhill very quickly. Within minutes he was gasping and he was unable to breathe for himself. I briefly caught a glimpse of him and then they whisked him away to the NICU, leaving me on the operating table. While I was being stitched up a nurse told me that he was the biggest 34 weeker that they’d seen, weighing a huge 7lbs 8oz.
The sad fact in many hospitals is that they don’t have a separate ward for mothers of babies in the NICU, so I was put onto a ward full of happy mothers with their healthy babies, it was soul destroying to be surrounded by constant reminders that my son wasn’t with me but was desperately ill on another ward.
Lincoln was around 6 hours old when I got to see him again, he was covered from head to toe in tubes and wires. He was on a ventilator and had lines going into his umbilical cord and into his hands and feet. It was at this point that reality hit me; his large size meant nothing, he was premature and was struggling because of it.
I’d been naive in thinking that his size would mean that he’d be ok. The grief hit me like a wave later that night on the postnatal ward. Listening to the cries of healthy babies around me I started to sob, grieving for the lost couple of months of my pregnancy, grieving that I couldn’t experience the joys of getting to do the first feed and the first nappy change with my newborn son, and grief that my body had failed to do what it was supposed to do. I also worried that I had let down my husband and my three year old daughter.
After a few days Lincoln no longer needed any help with his breathing and I was finally able to start getting more involved in his care. I finally got to change a nappy, and I was ecstatic to be able to try breastfeeding him. I expected him to latch on straight away, however, I didn’t realise that babies often don’t develop the sucking reflex until around 36 weeks gestation, and at this point Lincoln hadn’t yet developed it and so couldn’t feed by himself. Again, I’d assumed that because of his size that he’d be developmentally advanced too, but that wasn’t the case; he was behaving exactly like a 34 weeker should. I was persistent in trying to get him to breastfeed and after a few days he finally started to feed in tiny amounts. It was a slow and frustrating journey as he was too young and too sleepy (due to jaundice) to feed effectively, eventually though, he got it, just as the nurses had promised he would.
Now, five months later, I look at my happy, smiling little boy and can’t believe the journey that he went through. His first few weeks were incredibly rough, even once home we had constant hospital visits – prolonged jaundice, enlarged liver, hearing tests, hip scans, chest x rays, liver scans, blood tests – it felt never ending, but we’ve come out the other side. He’s still under consultant care but our not so little superhero will continue to fight through it.
People are always surprised at the size of Lincoln. He’s on the 98th percentile for his gestation so it’s difficult for some people to understand that he was premature. People expect preemies to the tiny, but that’s not always the case. Some of the comments that we get can be really upsetting, I know that they mean well, but asking if my dates were wrong, or telling me that I’m lucky that I didn’t have to experience the uncomfortable last stage of pregnancy isn’t helpful, it just makes me sad that I didn’t get the ‘normal’ pregnancy experience and it makes me feel like I’ve failed. I find myself telling strangers that he was premature, like somehow, me telling them will validate his experience. I want people to know that despite his size, he was poorly and that my son has gone through more medical procedures and tests than most people will have in their entire lives, but he got through it because of his fighting spirit and the love of his family.
With thanks to Tracy for sharing her story.
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