“nothing has changed”
– by fiona mylchreest
Fiona is the mother of five children, all born prematurely. She shares how “nothing has changed” 16 years since she had her last premature birth.
“#Borne to make progress“
I had five children prematurely: now I have five young adults. It’s 16 years since I had my last premature birth so I was thinking of putting down my Borne-blog pen because my experience would be out-dated: surely in those sixteen years, science and medicine would have moved on so much that my lived experience would be irrelevant?
“Jemima and her husband were plunged straight into the world of ventilators and incubators.“
This summer, one of my neighbours messaged me: her daughter had given birth prematurely; what advice could I give. The daughter, I’ll call her Jemima, had girl-boy twins at 31 weeks, just as I had. Jemima and her husband were plunged straight into the world of ventilators and incubators. Just like my twins, both needed help to breathe and had horrible stomach infections.
My twins have new challenges now; they make their own life choices and I am supportive (and try to keep my worries and opinions to myself), but I remember their births and their first weeks in the world as if it were yesterday. The plea from my neighbour brought back the hope and despair of the one step forward, two steps backwards; one twin improving, the other developing a new problem. Jemima’s twins were in a state-of-the art hospital, but she and her husband faced the same ups and downs, fears and hopes, exhaustion and worry. She had the same joy at her son coming off his ventilator, only to face the same worry as his tiny lungs got tired and he needed to go back on it. Her tiny baby girl suffered the same gut infections, the same agonising wait to see if antibiotics could fix it or if it might be necrotising enterocolitis, a life-threatening condition sometimes treatable by surgery.
“The first bath felt like a huge milestone; a gateway from NICU to normality. I felt such joy for Jemima when I heard she had bathed her babies.“
I remember vividly the anxious wait on Mondays and Thursdays to see if the twins had gained weight; the sense of triumph in a two-ounce gain, and the despair at any loss at all. There are target weights; for getting out the incubator into a cot; and for having a bath. The first bath felt like a huge milestone; a gateway from NICU to normality. I felt such joy for Jemima when I heard she had bathed her babies.
Jemima’s twin babies were in more sophisticated incubators than mine were, but eighteen years on, the experience was the same. Nothing had changed. The birth was unexpected. There was no warning that she was at risk of going into premature labour and even after the event, no explanation of why it happened.
“There was always a baby who weighed less, or was born even earlier and made a miraculous recovery and now you’d never know. “
I remember clearly when my babies were in hospital, or out-and-about in a pram which was much too big for them, people would tell me stories of other prem babies that they knew. There was always a baby who weighed less, or was born even earlier and made a miraculous recovery and now you’d never know. The stories were meant to comfort and inspire me, and often they did. Perhaps it was comforting for my neighbour to see my twins, average sized despite all the feeding issues; and not even a wheeze from the long-term conditions like respiratory distress syndrome.
But I was so saddened, speaking to my neighbour and hearing about Jemima. The neonatal care was wonderful and both twins are now home. The horrible realisation for me was that I am in a different generation from Jemima; our experiences should not be the same. Eighteen years on from the birth of my twins at 31 weeks, another healthy young woman is living the same experience. I can’t think of another area of medicine where there has been so little progress. There is so little research into the causes of prematurity. That’s why Borne’s work matters. That’s why Borne has brought together all the scientists researching premature birth worldwide, to share sharing their thinking and results. We need to change this.
ABOUT THE AUTHOR
Fiona Mylchreest is mother to five children, all of whom were born prematurely. She has written a number of pieces for Borne where she shares her experience and reflects on the implications and lifelong challenges caused by prematurity.