Penelope’s mum, Verity, shares their very emotional journey:
It’s been nearly a year now since Penelope was born, and I feel I’m ready to talk about her journey.
My pregnancy was relatively straightforward. I had gestational diabetes, so I was regularly scanned from 16 weeks. I had over six scans and nothing untoward was picked up.
I remember going to my 20-week scan petrified. I had suffered two losses before Penelope and I was so scared they would say there was something wrong. But I remember the sonographer turning to me and saying, “Everything looks great, good heart function.”
I had a c-section because of previous sections, but when Penelope was born, I just remember how quiet she was. I could see she was breathing, but she was just quiet, limp, small and blue. That’s how I remember her.
They told me she was ok and just needed some oxygen because she had fluid on her lungs from not having a natural labour. I felt something was more seriously wrong. I had three children and never experienced a baby looking like this.
They rushed her off to neonatal and my husband went with her. I will never forget lying in the recovery room, surrounded by new mums and their babies, and me, just alone. Haunting.
I was frantic trying to speak to my husband about Penelope. He sent a picture to me a few hours after she was born. She was blue. I called him and said, “Please go and speak to the consultant. Tell them she’s changed colour and there is something wrong.”
They didn’t think anything was wrong and said it was the flash from the phone.
I managed to get myself in a wheelchair and go see her. We were told she was fine and she would just need a few hours on oxygen. I raised my concerns again. Finally, I was able to speak to a paediatric consultant who had an interest in cardiac. He just happened to be at the hospital that day. I begged him to take a look at her. He said he would run some tests and, within minutes of doing an echo on Penelope, he said, “I need to call my colleague in Southampton.”
I heard his conversation with his colleague, and the words “I will blue light her now” will never leave me. He came off the phone, sat down next to me and said, “I’m really sorry, but your baby is very sick. She has transposition of the great arteries and we need to take her to Southampton, where there are specialists to help her.” He told me not to Google anything and repeated that she was very sick. He said she could die.
I felt like he was talking in a different language. It was 5pm. She was born at 10am and he was telling me my baby could die. I just couldn’t compute it.
She was taken that night and I followed in another ambulance.
Over the next ten days, it transpired that she not only had transposition of the great arteries (TGA), but also many other serious heart defects. Penelope was a small baby and, after a week, she started to go into heart failure. At ten days old, she had open heart surgery. Her surgeon told us that she was an extremely difficult case, due to the complexity of her defects and her size. He said he didn’t think he could save her, but surgery was our only option. He also said the post-operation period would be very hard, and she would most likely not survive.
We waited for ten hours while he managed to repair her heart. What then ensued over the next four months, I cannot even describe. She had multiple post-operative complications. We were told many times to prepare for the worst.
Penelope suffered from sepsis, blood clots, chylothorax, strokes. After two further life-saving operations, she pulled through. After four-and-a-half months, she came home.
It’s been a journey of recovery and trauma. We were not prepared. Her very serious heart defects were not detected during pregnancy. She was delivered without the specialist support we would have been given had we known.
She could’ve just been sent home. If that had been the case, she would have died.
I have seen and experienced first hand how lack of training and funding leads to so many babies dying or being diagnosed postnatally.
How different would her journey have been with a pre-natal diagnosis? How different would her life be with a pre-natal diagnosis? Would she have suffered a stroke? Would we have been more prepared? Could we have avoided the trauma and shock of it all?
These are questions we will never know the answers to.
Penelope’s journey hasn’t been easy, but she has fought and fought and she’s here and thriving. I would love to give another family the hope that I so desperately searched for in my darkest days.
These babies are so strong and so resilient. She’s our miracle baby, and she will forever be our inspiration.
Thank you for everything you do. Your charity is amazing. I find so much comfort in the support group. The heart community really is strong.
We are forever grateful to the Cardiac and PICU teams in Southampton. The nurses, doctors, consultants and surgeons are incredibly skilled, professional and gave Penelope the utmost care. They helped save her, and us as a family.
Find out more about how Tiny Tickers supports heart families here.