When you think of a premature baby, what do you see? 

 

For me, I think of a small baby, swamped by wires and tubes inside a plastic incubator, and I think for many people, that is their experience of having a premature baby. 

 

But it isn’t mine.  

 

If you’ve read my blog before or you follow my social media, you will be aware that both of my daughters’ were born with a suspected lymphatic malformation condition, meaning that they both have visible differences. My youngest daughter had a healthy pregnancy and the condition currently affects one leg and foot. My eldest daughter, however, had a much more difficult journey into this world, and a tough beginning, with the condition affecting three of her four limbs. 

 

Without going into too much detail here for you all, we learnt at 28 weeks that our eldest daughter, our second baby, was very poorly when I reported to the MAU for reduced movements one evening. 15th February 2017. That date is now etched in my brain as the beginning of this unique and surreal journey we are on. Upon scanning the next morning, I was informed that our baby had Hydrops Fetalis. Hydrops Fetalis involves excess fluid in areas of the body and it is a symptom of something being wrong, rather than a condition itself. She was now considered a high risk pregnancy, and it was emphasised to me many times that our baby could pass away before she was born. There was no option of delivering her immediately because, simply put, she would not survive. The weeks that followed involved many scans, discussions, blood tests, steroid injections and an amniocentesis, none of which were able to identify the cause of the fluid. At this point, we had no idea about her limbs, just that there was a lot of excess fluid within her body cavity, particularly around the abdomen. More appointments, more meetings, more discussions, all emphasising that our baby was at high risk of not surviving pregnancy or that there was a possibility that she would not be living for long following her birth. 

 

Due to her condition, I also developed Polyhydramnios, excess amniotic fluid, and gradually my baby bump had become hard and uncomfortable; Monitoring our baby’s movements became impossible, and as this was the only way to know she was still alive, I was eventually admitted to the hospital at 33+2 weeks to be monitored regularly… and I thank God every day that I was because four days later, the monitoring identified that something was going wrong. She was turning anemic and needed to be delivered immediately at 33+6 weeks by emergency c-section. 

 

Six weeks and one day premature, but she was not the small baby I associated with prematurity. She weighed over 6lbs. Her body was swollen, and three of her limbs were large and black in colour. In all honesty, it was far worse than anything I had ever seen before and beyond anything I had imagined during those last six weeks of pregnancy. There were the wires, the tubes, the incubator, the phototherapy and the ventilator. Everything signalled she was a premature, poorly baby, but she didn’t look like a premature baby. Even after the fluid was drained from her body, she weighed over 5lbs and was considerably larger than the babies she was sharing the NICU with. 

 

Many of the discussions on the doctors rounds were related to her condition, rather than her prematurity. On her first Friday afternoon, I was about to be collected to go home by my husband and sixteen-month old son, when her heart rate dropped. I remember the panic inside of me as I watched the numbers fall and heard the machine beeping, but the staff were very calm. The consultant, who was on the phone at the time, waved to a member of nursing staff, and signalled to my daughter. The nurse quickly came over, and somehow supported her, and her numbers returned to normal. After finishing his phone call, the consultant came and explained that this was not unusual in premature babies, and was not something to be too concerned by. However, by the following Monday, our baby girl’s health had declined rapidly. All ng feeds had been stopped, she was back on a ventilator, a new stomach drain was needed for a new build of fluid and she had received two more blood transfusions due to her struggling to digest the fats in breast milk. Her liver was also believed to have been caught by the initial line inserted when she was first born, causing jaundice, which unlike the jaundice often seen in premature babies, could not be treated with phototherapy. She was placed on specialist milk and vitamins, and made great progress from there. I have often wondered whether that moment on the Friday afternoon was actually the beginning of her decline that weekend, rather than something that occurred due to her prematurity. 

 

Over the weeks in NICU, nine weeks in total, her condition was always the main concentration. In fact, I don’t really remember having many conversations about her prematurity. It’s bizarre to say it, but it was almost like I had forgotten that she was a premature baby as well as a poorly one, because the conversations were not focussed on her prematurity and she did not look like the premature babies around her. 

 

And I think that has stayed with me a little. Now when I hear people discuss having a premature baby, I feel like an imposter joining into the conversation. I find myself saying, 

 

“My baby was six weeks premature, but she wasn’t a tiny baby’. 

 

I cannot relate to many of the discussions that other preemie parents have, in terms of the details within their journey, and I have turned down other opportunities to share our story on premature blogs due to questioning whether our story was relevant.

 

Our little girl is now four years old, running around and playing with her friends. In fact, she is taller than many of them, even as tall as her big brother. Any complications since she left NICU have been related to her condition, not her prematurity in the way the baby books describe. There's almost that thought of “she wasn’t really premature” linked to that, and I even questioned whether I had a ‘right’ to share my story of having a premature baby within this collection. 

 

But if I have learnt anything since 15th February 2017, from the mums I’ve spoken to in hospital waiting rooms, to the mums whose stories I have shared on this blog, it is that we can all have very different journeys but through sharing our experiences, we can support each other because many of the thoughts and feelings exist for us all. And every single one of us has the right to own our journeys, and embrace it as part of our story. My little girl WAS a premature baby, and I WAS a Preemie Parent.