As I write this the June long weekend is almost upon us and the town is buzzing with excitement at the prospect of travel with the easing of COVID-19 restrictions. For me, though, this weekend is a painful reminder of the start of my daughter’s heart journey.
When Penelope was born in March 2018 I felt all the usual feelings a new Mum does but with a side serve of surprise. She was pronounced to be in full health but I was surprised by this because throughout my pregnancy I couldn’t shake a niggling feeling that something wasn’t right. I had all the standard blood tests and ultrasounds and they all showed a baby that was developing healthily and normally.
Penny was a day old when both my Husband and Dad first expressed concern about the rapid movement of her diaphragm and a wheezy sound she made when breathing. The paediatrician checked her over and reassured us that her breathing was within the normal range. We remained concerned about her rapid breathing rate but she fed well, had plenty of wet and soiled nappies and put weight on so we tried not to dwell on it.
By the time we saw the GP for the six week check up, that niggling feeling was stronger than ever. The rapid rate of breathing continued to make us uneasy, so too did the fact that she sweat profusely when she fed and was no longer overly interested in feeding. I know that every baby is different but my breastfeeding experience with Penny was vastly different to my first daughter which to me was another indication that something wasn’t right. Again, Penny was declared a healthy baby. “Are you sure?” I asked, “because I can’t shake the feeling that something isn’t quite right with her.” The GP responded yes, she was fine. “You’re sure?” I asked again. Yes.
Our next stop was the Child Health Nurse (CHN) for the 8 week check up. We did this when Penny was nine weeks old and added poor weight gain to our growing list of worries. The CHN wanted to rule out a feeding or supply issue and suggested I cancel our weekly activities, stay home and feed Penny as often as possible.
Suffice to say this didn’t do much because by this point Penny would arch her back and scream when I offered the other side. Our next recommendation was to try formula top ups. She refused to take the bottle and from weeks 10-11 she put on five grams. F.i.v.e grams. I was devastated. She was considered failure to thrive and the CHN referred us to the paediatrician. I thought I had hit rock bottom when I heard those words but little did I know what was on the other side of the long weekend.
I took Penny to another GP on the Saturday and explained our situation. Further to our aforementioned concerns, Penny had been congested for over a month. I was worried about the fact that she hadn’t been able to fight off the infection. The GP examined her and told me it was a viral infection that would clear up soon. I left that office in total despair and no closer to an answer.
We persisted switch our attempts to get Penny to take the formula. Over the course of the long weekend I tried, my Husband tried and my parents tried. All to no avail. Meanwhile Penny was so congested that she was vomiting mucus and what little breastmilk she did have. Tensions were high because we all felt that this was coming to a head.
On Tuesday morning I was a Mum on a mission. My plan was to go to Outpatients and demand to see the paediatrician. I was prepared to wait the whole day if necessary. I was desperate. As it turned out, my Mum had the same plan and shortly before I arrived she had begged the paediatrician to see us. He graciously agreed.
At 9am on June 5th our amazing paediatrician diagnosed Penny with a hole in her heart. Within 10 minutes he had ascertained that she had no femoral pulses (a common sign of a cardiac issue) and had a very loud heart murmur. I was flooded with relief. Finally.
Ultimately, Penny was diagnosed with a ventricular septal defect, coarctation of the aorta and a bicuspid aortic valve. That initial feeling of relief was soon replaced with terror. I remember asking my Husband how we were supposed to come back from this if she didn’t survive. That was rock bottom. Exactly 48 hours after we saw the paediatrician, Penny underwent open-heart surgery to repair the VSD and coarctation. The valve was not causing any complications so it was left alone.
Before surgery we were warned that recovery is like riding a roller coaster. Try not to get too high with the highs or too low with the lows. We were fortunate that the lows were few and far between and Penny recovered faster than we dared hope. We are also lucky that she is unlikely to need further surgery.
While Penny wears the physical scars of surgery, we wear the emotional scars. I don’t think it’s possible to experience what we did and come out of it unscathed. I’ll never forget the day I took my Grandfather into PICU to see Penny post-op. It was only his second time seeing her in the flesh. He looked at her briefly then his knees buckled and I had to put his arm around my shoulders and part walk, part drag him out of there as he sobbed. Recalling that memory brings a lump to my throat. More recently I drove past an ambulance and was suddenly overwhelmed with the memory of our ambulance rides. Sometimes the memories of that time take my breath my away. It’s not something you ever “get over.”
I tell our story as a cautionary tale to always trust your instincts. You know your child better than anyone.
Two years on Penny is a healthy and happy two and a half year old. She is as strong and capable as her peers. She knows where her heart is and rhythmically pats her chest while making the “boom-boom” sound. I tear up every time. With her golden curls she is the sun around which our world spins- quite literally sometimes!
There are many people and organisations to whom we owe thanks and while we have this platform, we’d like to acknowledge them. We cannot speak highly enough of our local paediatrician; he is an honorary member of our family. We are grateful to our local hospital for the care they showed us on the day of Penny’s diagnosis. To St John’s Ambulance, the RFDS, Perth Children’s Hospital, Ronald McDonald House and HeartKids, we say thank-you. One of my favourite photos is of Penny waving her blue HeartKid flag during last year’s Two Feet and a Heartbeat walk. Finally, our sincerest gratitude to the blood donors and heart tissue donor. Your gifts and generosity mean that we still have our girl.
- Mum Dempsey