World Prematurity Day

Two years on and 36 weeks pregnant

Our twins were born in their 27th week of pregnancy – we sadly lost one of our boys following a difficult pregnancy with Ezra having a SUIGR diagnosis and concerns of TTTS. Laser ablation surgery kept Rowan alive, and heartbreakingly our little Ezra just was not strong enough for the upcoming fight.

Rowan spent 93 days in NICU, and came home a week after his due date. His NICU experience was challenging and incredibly touch and go. Two years later, Rowan still has lasting impacts from his prematurity but he is happy and thriving, and meeting his milestones in his own time. When we lost Ezra, we were hopeful we would have another baby in a close timeframe to Rowan, so that the guilt and feelings I have of Rowan being alone when he shouldn’t be could be relieved, and here I am two years later, at 36 weeks pregnant, almost ten weeks further than I made it with my twins.

When we learnt we were having another boy, it filled us with joy. We wanted two boys, that’s what we were supposed to have, but now I have conflicted emotions,  I should have my three boys. Ezra should be here. Our new baby doesn’t replace the gap in our lives and I think part of me thought it would be healing having a boy, but I ache each and every day wishing Ezra was here too.

My appointments for this pregnancy have been intense, I have had support from the pre-term clinic and I am under consultant led care, sadly not all has been straight forward – the pregnancy has been fine – but professionals at times have been unprepared. I’ve had sonographers ask if I’m carrying twins, I’ve had different consultants ask how my twins are, there have been mistakes with due dates, diagnoses and many professionals have been unprepared when I tell them my reality, that one of my babies died. I bump into my twin midwives waiting for my appointments, and I see women with the biggest smiles on their faces preparing for their multiple pregnancies. It’s hard – I didn’t get a nice experience with my first pregnancy and it’s hard to comprehend that my notes are wrong, when it seems so easy to write things down correctly, it feels careless, and when I challenge this I’m told notes cannot be changed but I can complain to PALS, which again feels unsupportive. Waiting in the same waiting rooms where we had such heartbreaking news two years ago is really, really challenging. We are grateful that this pregnancy has been smooth, and we are prepared for a safe arrival. We do feel lots of intervention has been put in place to ensure I do not experience another premature birth. 

Rowan has follow up appointments with the NICU, he is still under care from his consultant neonatologist. He has a chronic lung disease diagnosis and pulmonary stenosis which we believe was caused due to TTTS and the laser surgery. Rowan also has weekly physiotherapy which has virtually been every single week of his life, and started in the NICU. We take Rowan to visit the NICU often, and it’s strange but it feels like home, he truly knows the nurses and doctors and he is so content when they hold and play with him, it really is a special connection he has with the team, something that I cannot really explain, it really is like he just knows them on such a special level. We are so grateful for his care. We were so worried for another premature baby, I don’t know if truly I could face the journey again, and to have to contend with caring for a premature child whilst then being away from Rowan, and this has been hard to navigate. 

As World Prematurity Day approaches, we celebrate Rowan, and I think of all the babies who didn’t get to go home, but fought such a courageous battle to be here.  The trauma of the beeps and noises never leaves you, triggers are everywhere – television, alarms, smells, but it is becoming easier to accept this was his start. We know we are so lucky to have our special boy and we will always reflect and share his story at this special time. I wouldn’t change a thing about Rowan, but I do wish so deeply his twin Ezra was here with him to walk their journey together.