When Ronnie was born, mum, Gemma, had no idea that he had patent ductus arteriosus (PDA). After numerous different checks, his heart defect was found. Gemma tells us their story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
Ronnie was born on the 12th of September 2023, via caesarean section. He was taken straight to the neonatal intensive care unit (NICU) due to trouble breathing. Ronnie remained there until Friday the 15th, which is when he began breathing on his own and drinking from bottles despite his tongue tie.
We stayed in the postnatal ward until Saturday when a doctor noticed Ronnie had a slight heart murmur and asked the midwife to keep a close eye on him. Ronnie seemed generally well, but when drinking his bottles, he tired easily and began breathing quickly.
The following day, the same doctor re-checked Ronnie and admitted him straight back to the NICU. This came as a sudden shock to me, so I quickly followed the doctor. I then noticed a team of doctors rush around Ronnie and they swiftly began doing various tests: hooking him up to oxygen and different machines. As a mum, it killed me to see my newborn like this once again.
The next day, the consultant performed an echocardiogram, which revealed Ronnie had patent ductus arteriosus (PDA). We were informed that it was very large, and they thought it would need closing.
Ronnie spent weeks laying in an incubator on regular medication to prevent heart failure. He was tube fed every two hours – only 20ml due to needing restricted fluids to prevent strain on his heart.
Our hospital began liaising with a children’s hospital to decide on the best plan of action and to discuss when Ronnie should have the procedure to close the duct in his heart.
I regularly spent 10 to 12 hours a day sitting by Ronnie’s bedside – feeding, dressing, bathing, and changing him, as I would if he were at home. The staff began to know us and knew we would do anything for our son.
Ronnie was in NICU for just under four weeks when I became unwell myself with sepsis and was readmitted on Tuesday the 10th of October. Yet, the following day, a bed became available in the cardiac ward at the children’s hospital, which meant Ronnie could be transferred, ready for his surgery.
As a mother, I found it soul-destroying to watch my son leave the hospital I was staying in. He would no longer be across the corridor, minutes away from me. That night, I sobbed and was worried for my child. Though I knew he was receiving the care he needed.
All while this was happening, I was also away from my daughter, which negatively effected her mental health.
At this point, I had been diagnosed with a small hematoma – a collection of blood in my stomach. I was treated with IV antibiotics before being discharged on Friday the 13th. I went straight to see my son at the children’s hospital.
However, I still wasn’t fully recovered, so I stayed home with my daughter over the weekend, resting. By this time, doctors were discussing the procedure to close the duct in Ronnie’s heart with my son’s dad, who would relay messages daily to me.
On Tuesday the 17th of October, I thought I felt ok to visit my son, yet my stomach had swollen rapidly, and I struggled to walk. A family member kindly offered to drop my mum and I at the hospital. I was frustrated that the pain and discomfort I was in made it hard for me to hold my son, which resulted in me having to leave the hospital early.
That evening, my caesarean section scar burst open, and blood gushed out. Because of this, yet again, I had to go back to the hospital to await surgery to have my wound cleaned and a lot of infected tissue removed – it seemed my recovery was back to square one.
My son’s operation was scheduled for Friday the 20th of October. Unfortunately, I had to lay in a side room in a different hospital recovering – unable to be by his side, which was soul-destroying. However, I knew my son needed this operation. I sat and clock-watched for hours while his dad remained at his bedside, waiting for Ronnie’s return.
The procedure was a successful – we instantly felt like a weight had been lifted. Ronnie was discharged on Sunday the 22nd of October. Funnily enough, I was discharged the same day and collected from the hospital where our original journey had started.
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