Our story. End-diastolic flow reversal.
We had our beautiful perfect 1st son Frankie born 5th March 2011. He was born at 29+5 weeks relatively ok gestation for most babies whilst still prem survival rate is a lot higher at this gestation, however due to preeclampsia causing the flow reversal in my placenta arteries this meant Frankie was more like a 25-26 weeker which dramatically lowered his survival rates from 80% down to 40%.
He was born via emergency c-section screaming into the world perfect in every single way had all his fingers toes and jet black hair. Frankie was vented straight away so they could assist his breathing even though born breathing on his own, I had no doubts my baby would survive he was perfect to look at just his lungs under developed.
Day 1-2 he was fine perfect stable. Day 3 I was woken up about 5am as he had had a bleed on his lung and needed transfusion and platelets to stem the bleed he the started with jaundice. He was hooked up to every power source available for his lights Ivs etc. Day 4 his lungs were failing they tried the occilating ventilator if you haven’t seen this it shakes the baby’s body quiet violently to free the fluid surrounding lungs so isn’t a nice sight to see, he was very poorly at this point.
The consultant took me into a room alone with a neo nurse as all my family had left and was explaining how Frankie was very poorly again I didn’t for one second think my beautiful baby would die. Until the consultant said to me your son is the most critically ill baby we have on this unit I looked him in the eye and asked those dreaded words will he survive the night the response absolutely floored me NO.
I walked out of that room rang my partner and screamed he needed to get back to the hospital then rang my mum I was still quiet calm at this point, as I walked back to the ward my midwife took one look at me and I screamed my baby is going to die I sobbed inconsolably at this point how could my perfect baby of 4 days old die this isn’t meant to happen that’s not what happens you have a baby and bring them home.
The drs gave him some nitrous oxide in his vent stating it won’t make a difference but they will of tried everything. With in minutes his oxygen levels went from 70’s up to 90’s and they actually had to turn his vent down a bit I was actually believing my baby would live.
Day 5 my 25th birthday – a day that changed me for the rest of my life. Frankie survived the night was still very unstable I don’t remember much of this day it’s still very hazy approximately 5/6pm Frankie started to dip his oxygen levels and I sat and watched I begged and pleaded for him to keep fighting his tiny body going through Hell his machine was beeping left right and centre drs and nurses stood all around the room.
The dr come to me and said there was nothing else they can do my baby was going to die I asked to hold my baby the first and last time I held him he took his last breath in my arms I will never forget the sound of the air leaving his body how light he was how perfect he was yet he had died how is life this cruel. I went home and felt numb I had no words to speak just sheer heartache like nothing you have ever felt.
We planned his funeral and I picked everything I wanted for him the wicker basket I wanted him in the teddies pics I wanted with him too. The day before I his funeral I visited him I picked him up out the basket kissed him goodnight for the last time and promised him il never forget how strong he was and how proud he made me.
After his funeral I found myself lost alone angry hurt and nobody understood how it felt. I sort help from friends online and I got help from people I didn’t know cared so much I also realised the true meaning of friendship how friends stood by me if I replied to texts or not friends who to this day never ever forget and ALWAYS mention my frankies name these friends are worth their weight in gold true diamonds.
I do believe things happen for a reason whilst I’m yet to find the reason as to why Frankie died it did however bring me to a friendship I probably wouldn’t of had such a strong bond with if sadly we didn’t have to share the same heartache in loosing our babies BUT I travelled miles to meet this friend and have remained friends since 2012 and probably grow old together.
Always remember our babies. Always say their names, and don’t think they are crazy or weird for celebrating their baby’s birthdays anniversary’s because until you have walked in the shoes of a bereaved parent then you won’t understand that our child still lived our child was still loved and our child had hope of a life. Well never forget our child we won’t ever stop mentioning our child names.