Growing up as a preemie, you are aware of your premature birth - your gestation, your weight, and your medical issues. My mum kept a diary of my time in the NICU and of my childhood, covering everything from the day I was born until the age of 11. By the time I was ten, I was able to recite most of my vital statistics from memory.
I was born in 1978 at Southmead Hospital, Bristol. I was 26 weeks gestation, and was one of the first 1,000g babies to receive full neonatal intensive care at the hospital. At the time, I was described in the press as a "miracle baby" due to my extremely low birth weight and medical issues. I know it's cliché but I wasn't expected to survive. My chances were so slim that I didn’t even have a name for the first two weeks of my life. At six weeks I was baptized, then at nine weeks old I developed meningitis. In total, I spent 168 days in hospital.
For all that I knew about my birth it was mostly just fact and figures, there was little context into which to place it. I certainly didn't know of any other premature babies, or children of my own age who were born premature. As the years passed, I began to search for information relating to the technical side of my premature birth. Eventually I found a number of online forums with other adults born premature. Including this one at inspire.com
At last, I was able to discuss my early birth with other adults – who had not only received similar medical treatments, but also had similar issues and questions as myself. Finally, people who knew what it was like to grow up being a “miracle” baby!
In talking to these people, one thing became clear. The main focus of our discussions were not about how early we were born, or how long we spent in intensive care, or how well we did at school. Instead it was about our long term quality of life and the support we received from those around us.
My story was no longer unique, but part of a bigger picture with other people, who I had much more in common with than I could ever have imagined. For those of us born in the late 70's or early 80's our care often involved using cutting edge technology. Or trials of new treatment methods that would go on to become standard practice in neonatal care. Yet for all this modern intervention, when the day came to finally leave the NICU, we would all be dressed in dolls clothes and taken home in a child's toy pram.
It is often not until much later in life that you are able to fully comprehend the sacrifices that are made by others on your behalf, be it parents, relatives or the doctors and nurses charged with your care. For all that I know about my early life, one thing is clear, I have absolutely no experience of having a premature or sick baby.
I cannot tell you how it feels to have to call the hospital every morning to see if your baby made it through the night. I cannot tell you what it feels like to be told that your baby has to go back on ventilation due to yet another infection. I cannot tell you what it must be like to wait eight weeks just to hold your baby for the first time. These are all things my parents had to deal with, and I am so proud of the fact they did.
It's why I support Bliss in their work - not only for babies like myself, but also so that every parent has access to the support and information they need. In the 15 years I have been supporting Bliss, I have seen the impact they have had on the information available for parents – as well as the changes they have made in policy and thinking towards issues surrounding premature birth.
Other premature adults and I, cannot say what it must be like to go through the NICU as a parent, but as preemies ourselves, having been where your child is now, we thought we could offer you some words of encouragement below for being such amazing preemie parents.
“Just sitting and waiting may not feel like you are helping me, yet every day I am thankful for your love, support and belief in me.” - Geoff, born at 26 weeks, 1978
"Your love, patience and strength is worth every moment" - Kelly, born at 26 weeks, 1984
"I know that you love me and are worried about me. I'm tiny and fragile and that scares you. But your presence, your gentle touch, your soft lullabies and whispers of comfort reach my heart. We will get through this together. It may not feel like it, but your presence provides me with the strength to keep fighting" - Karla, born at 32 weeks, 1982 (an unexpected surprise - part of a set of identical twins)
I have seen the advances in neonatal care made during my lifetime, and I am extremely proud to say that I am part of that story. I am proud to say that I was a preemie.
If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages
If you would like to share your story with Bliss, please fill in our online form