Though Grace was a happy, seemingly well baby, her mum Georgina grew increasingly worried when she didn’t put on weight, despite having a very good appetite. She was finally diagnosed with Patent ductus arteriosus (PDA) and an atrioventricular septal defect (AVSD). This is their story:
On January 20th 2019, we left hospital with our daughter, Grace, who had had her birth checks and was signed off as healthy and well after two days in hospital, so you can imagine our surprise when nine months later, we find out Grace was in heart failure.
Grace has a huge personality; you will never meet a happier, smilier and more social soul, however, when she was a few weeks old, we started having our concerns.
“This can’t be right?” I asked many friends and family after I’d taken layers of clothes off leaving Grace just in a vest, still with beads of sweat dripping off her forehead and her clammy skin, covered in mottling.
That summer her hair was permanently wet with sweat. It was particularly hot, so the answer of, “She may just be a warm baby,” became something we accepted. Especially considering there was nothing deemed abnormal heard with her heart and at that point and she was happy.
As weeks went on and we were weaning, Grace’s weight gain stopped dead. She has a cow’s milk allergy which had been really well managed, but it was suggested maybe she needed extra support or calories, so we got her dietitian on board.
Weeks passed where Grace had the biggest appetite; friends and family regularly joked, “Where does she put it all?” Yet her weight stood still. She’d gain some and I’d get some momentary relief from my worry and then she’d lose it and more.
I fell to the floor in tears at a weighing clinic crying, “What am I doing wrong?”
I had never felt dread like it, fearing another loss while driving to our weigh-in clinics every two weeks.
By the time we had a paediatrics appointment, Grace had dropped three centiles despite weekly calls with our confused dietician, calorie boosting powders and adding calories wherever possible.
This paediatrics appointment was the moment our lives changed.
“Is there anything you’re worried about?”
I explained I had taken her to be checked out about sweating but was told everything was OK. I was further questioned about this and then the consultant listened to her chest and heard a murmur. He went to fetch another consultant to perform an ECHO scan.
We were then told Grace had something very seriously wrong, she would be admitted straight to the ward at our local hospital, started on medications for fluid on her chest and tube fed formula until we could be admitted to the cardiac ward at Birmingham Children’s Hospital.
That evening, we were blue lighted to BCH where we found out the true extent of Grace’s condition.
She was diagnosed with a complete atrioventricular septal defect (AVSD), and patent ductus arteriosus (PDA) which caused high blood pressure in her lungs and caused the left side of her heart to become significantly enlarged. We were lucky our daughter was still fighting.
There was also added concern that I was 28 weeks pregnant with my son and would need scans urgently to check his heart structure was normal – luckily it was.
Five days later, Grace had open heart surgery, possibly the most gruelling five hours of our lives.
We had a tour of ICU in preparation for her coming out of surgery, but nothing prepared us for seeing our little girl absolutely full of tubes, wires and on many machines. She was expected to be in there for two days, but she managed to be out of ICU within a day and onto HDU.
The pain relief meant it took her a few days to smile. All I wanted was a smile. When she did get there after a few days, her recovery got better and better at a rapid rate. My beautiful Grace was fighting back.
Grace now is happy and loves spending her time with us, her two siblings and her family and friends. She has so much more energy to do so.
Her surgery had to create a second valve and while this was successful, the valve on the left side still leaks, which means she will need further surgery in the future. She has medication three times a day to help prevent the leak from worsening until her next surgery and we are regulars at BCH heart outpatients, keeping an eye on her valve.
She is back to the centile she was born at and her appetite is still as great! We couldn’t be anymore grateful to everyone who saved her and has got her this far and who will help us in the rest of our journey.
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