Ventricular Septal Defect and Atrial Septal Defect: Maisie’s Story

Maisie’s heart defects, VSD and ASD, were diagnosed when she was two weeks old, during the height of the COVID-19 lockdown. Here, her mum Jessica, tells their story in order to give other newly diagnosed parents hope for their own journeys.

Opening up my heart…

My husband and I became parents for the first time in March. We gave birth to a beautiful baby girl, Maisie Hope. Ironically her name was chosen because of its meaning and before the word ‘hope’ became a symbol and word people are holding onto in this Covid-19 crisis.

We, like many, were heartbroken on 23rd March when strict lockdown was implemented. This meant my parents couldn’t fly over from Northern Ireland to meet our first child and their eighth grandchild. This even affected my husband’s family, as they live an hour away in London.

I thought having a newborn in the middle of a pandemic was going to be the hardest journey I would ever have to make – little did I know what was around the corner.  

As a first time mum, everything is brand new. Babies don’t come with a manual! Yes, it would be amazing if they did. One afternoon, I was cuddling Maisie and noticed she was breathing rapidly. I watched her stomach go in and out and saw her tiny throat tug. I put my hand on her chest and felt her heart beating really fast. My gut told me something wasn’t right. However, I found it strange that she wasn’t distressed. In fact, she was very content.

I called my husband in a panic. We looked at each other and knew something was wrong.  I phoned our GP who was amazing. As soon as he saw Maisie, he phoned paediatrics and sent us to hospital. He heard a loud murmur and was not happy with Maisie’s rapid breathing. I knew from that moment it was serious.

At the hospital, the on-duty Paediatric Consultant specialised in cardiology. He acted fast and performed an echo cardiogram.  That evening our world was turned upside down. 

The consultant was able to diagnose her condition straightaway. Maisie, at two weeks old, was diagnosed with congenital heart disease (ventricular septal defect and atrial septal defect). The level of care in our country is outstanding. Thanks to the consultant, our precious daughter will be able to enjoy the life she deserves.

I held my tiny, 6lbs baby and listened to what we were being told. “Failure to thrive,” “open heart surgery” etc. I then went blank, numb, unable to hear anything else.  I held my husband’s hand so tight and sobbed my heart out. In that moment, the consultant looked at me and said these very important words: “This will not define Maisie.” 

I held onto the words because I felt all the dreams I had for my baby had been shattered.  I felt my own heart was broken into pieces.

I have thought about who might be reading this blog post. Perhaps a new mum, who is crying into her pillow after hearing the devastating news that her baby has a heart condition.  Or the parents frantically searching to find information on open heart surgery. I was that new mum, sobbing and googling.  In that very moment I came across Tiny Tickers and found comfort in reading people’s stories and seeing there is support and help available amongst a community of other parents. 

I therefore am not going to dwell on the pain or the trauma I endured finding out my two week old baby had two holes in her heart.  I’m not going to give detailed account of the four week hospital stay on my own, without my husband, because of Covid rules, or learning how to NG tube feed and feeling overwhelmed.  Instead, I want to encourage you and make you see that, thanks to the NHS heroes, there is hope.

In May, Maisie and I were transferred by ambulance to Southampton General Hospital to await urgent open heart surgery. As I took the lift, wearing my mask with the ambulance crew, I saw the famous Banksy print hanging on the wall, which pays tribute to the NHS.  I think it will forever be my favourite picture, especially when I got to take a photo of my husband and Maisie standing by it when we were finally allowed to go home and be reunited as a family.

The day I handed my tiny precious baby to a stranger and a team who were going to save her life will always be a vivid memory. I have never experienced a day that felt so long, and so frightening.  We waited and waited for what felt like hours. 

I will never forget the moment our surgeon knocked on our door and told us the operation was a success. The tears of relief began to stream. We were told that, in a few hours, we would be able to see our precious Maisie in PICU. She was being cared for by real life superheros.

I sat by Maisie’s side, day by day, and watched her show everyone what a fighter she really was. My little baby was able to come off a breathing tube and breathe on her own, with the help of oxygen. Then, she conquered her next challenge of having her pace box removed. Maisie had to be NG tube fed for four weeks prior to surgery, because she was struggling with feeding.   Over the days I watched her learn how to take her bottle again. Her complexion started to look healthy and her stomach didn’t move in the disturbing way it did before. My baby was thriving before my very own eyes. 

Now, four weeks post surgery, I’m writing this post and looking at Maisie. She certainly has not been defined by her condition. She is smiling, kicking and gaining weight!  Last week she started to laugh for the very first time and our hearts burst with joy.

My advice for all new parents is to always trust your gut. If something doesn’t seem right, or you are unsure, always get it checked out by a doctor. Maisie’s condition was not spotted in pregnancy and she was born with an undiagnosed heart condition.  Sadly 1,000 babies leave UK hospitals with an undiagnosed heart defect every year.’

The past three months have been the most difficult journey I have ever faced in my life.  So many times I wanted to fast forward a year, when all this would be over us and a distant painful memory.  However, I don’t want to forget the indescribable pride I have for Maisie and what she has accomplished in her three months of life.  I don’t want to forget the love shown to us by the incredible doctors & nurses who cared for me and wiped my tears when I couldn’t speak. I don’t want to forget family, friends and strangers in our community who heard our story and helped us in lockdown – we were blown away by their kindness. I don’t want to forget how strong I was when I felt like crumbling.

Maisie Hope you are my hero, you are braver and stronger than anyone I know. Your tiny little heart is now free to live as big a life as you want.

You will always be my Amazing Maisie.

Find out more about VSD and ASD.