By Verity Saxon @penelopeheartwarrior
Verity is Mummy to Lyla, Sebastian, Theodora and Penelope.
“I’m so sorry your baby has a very serious life threatening heart defect and I don’t know if she’s going to survive”
The words you never ever imagine m being uttered in the same sentence in your whole entire lifetime, but just over 2 months ago on 26 May 2022, our beautiful Penelope was born and the consultant said these exact words to me and my husband, Andrew just hours after she was born.
Penelope is our fourth and very much longed for child. After suffering multiple miscarriages prior to Penelope, she was the rainbow baby we had hoped and prayed for.
Pregnancy after loss is extremely hard. There wasn’t a day that went past that I didn’t think this is the day we are going to lose her. It was like reliving the trauma of my miscarriages every single day. However, apart from having gestational diabetes (which included multiple ultrasound scans) and horrendous morning sickness, my pregnancy was pretty normal.
As the end of the pregnancy drew nearer, I just couldn’t sleep- it was more than just pregnancy insomnia. I had this fear that something was wrong with the baby. Call it mother’s intuition, or something more powerful than that, but I just had this overwhelming feeling that we weren’t going to bring Penelope home the way we had our other children. It was an immense feeling that something awful was about to happen. I know this might all sound very dramatic, but it’s truly how I felt, and I remember turning to Andrew in the middle of the night when I was about 36 weeks’ pregnant and telling him that we weren’t going to lose Penelope at birth, but something else would be wrong with her. He looked at me like I was mad (not unusual for our marriage let me tell you!). In the weeks before she was born, I confided in my husband, family and friends with my fears, and they just kept saying it’ll be fine, don’t worry, but I just could not stop this feeling I had.
On the day of my elective c section, I remember walking towards the hospital and turning to Andrew, I said I just want her in my arms safely, and I don’t want anymore scans of this baby. I definitely had scanxiety, but little did I know that Penelope would go on to be scanned daily if not more in the weeks following her birth. Oh the irony.
As soon as Penelope was pulled out of me in theatre, and they showed me her, I gasped. I couldn’t get over how small she was, and her cry, you could barely hear it. I was shocked, and extremely worried- she didn’t look right.
I’d been told all along my pregnancy that Penelope might be big because of my diabetes. I kept asking if she was ok, why wasn’t she crying loudly, was she breathing, would she have brain damage, but the midwives and consultant assured me she was ok. They took her behind me to clean her up for what felt like forever and Andrew went with them.
The midwives and paediatric doctor told me she just had fluid on her lungs from a c-section, and she just needed a few hours on some oxygen.
What transpired over the next 12 hours is still unimaginable and beyond traumatic, but things only got worse.
After being told for hours and hours that there was nothing wrong with Penelope, finally I spoke to a consultant that listened to my concerns. He quickly diagnosed Penelope with a fatal heart defect - Transpositional of the Great Arteries (TGA). In my whole life, I’d never heard of this heart defect and I doubt many of you reading this will have.
You know when it’s bad when a Dr starts their conversation with “I’m so sorry but…”. I will never forget the face of the consultant or that moment for the rest of my life. It changed everything for all of us, forever. Within hours, Penelope was urgently transferred to Southampton hospital where she remains to this date.
What unfolded over the next 2 months is so hard to articulate in just a few paragraphs, and I simply cannot do it any justice, but I will try.
Penelope was later diagnosed with 4 very complex heart defects (TGA, VSD, ASD and a coarctation of the aorta) all of which were life threatening, and without emergency heart bypass surgery she would not have survived. These are defects that should have been detected at her 20 week scan, but unfortunately due to limited funding and training not enough sonographers have the skill and capability to detect them.
On the day of her surgery, at just 10 days old we were told by her surgeon, Nicola Viola, Cardiothoracic surgeon at Southampton University Hospital that he didn’t know if he could even repair her heart. She was 2.9kg and her heart defects were so complex, but he has no choice but to try and we didn’t have any other option. He said he would only be able to know once he’d opened her up.
After 10 agonising hours, we waited to hear if he was successful, and he was. This man saved our daughter’s life, and words cannot describe that feeling. We felt compelled to honour this huge moment and man for Penelope, so we gave her the surgeon’s surname as her middle name, Viola. Her first middle name Koa, means warrior and she most certainly is that.
This wasn’t the end of Penelope’s journey to recovery. Unfortunately she suffered multiple post operative complications, from sepsis, to collapsed lungs. After 3 weeks of being in a critical state we felt she was pulling through the worst, but sadly not. Penelope had developed clots around her neck and jugular from lines inserted into her neck to feed her medicine during and post surgery. This created pressure in her body which resulted in excess fluid to drain from her lungs. To date they are still draining. She has had two further operations as a result- fluid drained from her heart and her lung pleura stripped, all in an effort to stop the fluid accumulating on her lungs. If things couldn’t get any worse, we were told she had brain damage from strokes she had when she was born. It is difficult to say what impact this damage will have on her life, but it’s her mobility on the the left hand side of her body that’s effected, and by how much? We just don’t know yet, but we really don’t care. Penelope is our daughter and we will love her no matter what.
After 10 long weeks in intensive care and treatment from the amazing team at Southampton, Penelope is finally turning a corner. There is hope that the fluid is slowing down enough, but she still remains in hospital with serious complications.
We don’t know when we will be able to take Penelope home, but even just a few weeks ago we didn’t know if we would ever be able to take her home. Throughout this whole time, Penelope has relentlessly pushed through. She is a miracle and we are in complete awe of her.
Living on a children’s intensive care ward surround by loss, trying to juggle your 3 other children, living away from home, all whilst holding vigil at your very very poorly baby daughter’s bedside is indescribable. I’m not sure I will ever be able to comprehend it. There were many dark days, however, our faith, hope and resilience has never wavered. I don’t know where we found the strength everyday but we did. Everyday is a new day and everyday is a day that can bring new hope and healing. I cannot express anymore how deep we had to dig to keep on going, but you just do.
No matter what challenges you face in life, you can and you will get through them. If anyone can teach you that, it’s Penelope Koa Viola. She’s a marvel and will forever be ours, and many others’ inspiration.
Nothing is impossible when you have hope.