Birth Story: ‘My baby was born with half a heart’

Posted in Birth Stories.

Baby Matthew in hospital hooked up to IV lines and breathing support.

As Angela rushed away from another busy day working at Parliament House in Canberra, her mind was far from focused on the obstetrician’s appointment ahead.

After falling pregnant with her second child during the Covid-19 pandemic, she was now 19 weeks along and juggling a hectic life with a toddler and a demanding career.

Little did Angela know, that her whole world was about to be turned upside down by a very rare and shocking discovery during a routine ultrasound.

“We had been told a few weeks earlier he would be our second boy. I ran out of Parliament House, running late, just thinking about what work needed to be done and what I could do after I got back,” she tells Mum’s Grapevine.

“As I pulled up to the doctor’s, Chris (my husband) was there. I suddenly snapped into focus. I remembered our last scan, at 15 weeks, when we were told there was a missing vessel in the umbilical cord. We asked if this would cause any issues and we were told most likely not, but we would know once we saw the development of the kidneys at the 19-week scan. I started to think about the possibilities of problems. Of a missing kidney or what a missing vessel in an umbilical cord could mean.”

‘We broke into a million pieces’

A man and his pregnant wife with their toddler walking in the park

With their fingers and toes crossed for good news, Angela and Chris tried to stay positive while they anxiously waited to see images of their unborn baby.

“We went into the scan and our very happy, larger-than-life obstetrician started the scan. He looked at the brain and told us it looked good, then measured the lengths of the femur and head to toe and told us he was a healthy size. Then he started scanning the kidneys. I held my breath and he said, ‘Two kidneys, both look fine’. And I started to breathe calmly again.

“Then he started scanning the heart, and he stopped talking. As soon as he was silent, and didn’t just say ‘heart is good’, I knew there was a problem. I was watching the screen, and I could see the blue and red flashing on the ultrasound to show blood flow. I watched the Dr as he changed directions of the scan, looked at the screen, and analysed what he was seeing over and over. It felt like an eternity.

“Then he looked up and said to us, ‘I’m really sorry, your baby has a very serious heart defect’. He moved to his desk to get a paper and a pen and started writing. He said, ‘Your child only has two chambers of his heart, not four, I need you to go get another scan immediately’, and he wrote down the details of where we needed to go in the hospital. He picked up the phone to his colleague at the hospital and told them we were coming, then he called his receptionist in the front room and asked her to clear the room for us to leave without seeing other expectant parents.

“I started to tear up. It wasn’t the full-on cry I would have expected straight away but felt frozen. But I got up… and we left….. At that moment we broke into a million pieces.”

A 50% survival rate

Doctors examine a newborn baby

Barely able to comprehend what just happened, the couple was told they’d need to urgently travel to Sydney for an expert second opinion with a paediatric and fetal cardiologist.

“We didn’t know what it meant, we only had such a small piece of information, but we felt like we had just been given the worse news you could ask for. As we sat in the car to go to the hospital, I immediately thought about Sam, and the impact of having a sick brother would have on him, his life, and his family. He deserved the best and my heart broke for him. I started to cry.

“We arrived at the Canberra Hospital and had to go to the Fetal Medicine Unit. A part of maternity that looks after high-risk or complicated pregnancies. We waited for what felt like forever, but it was probably only about 45 minutes. The head obstetrician at the FMU came and collected us and took us in for a scan. She said our Dr had advised her he thought there was a problem with the baby but gave her no indication of what he thought it was. This was to ensure it was a true, second opinion, without any preconceived ideas.

“So, we started our scan again. Scanning every little aspect of our little boy once more. Unlike our Dr, this Dr was very quiet. She didn’t speak, she just scanned and took pictures. When she was done, she said, ‘I also see a significant problem. I will meet you in Meeting Room 3 and we will discuss.’ And she left.

“We were then left with a nurse who openly started talking to us about amniocentesis and terminating our pregnancy. It was incredibly confronting, and Chris shut her down very quickly. Moving into Meeting Room 3, we sat and waited. We cried. And we waited more. When the Dr eventually joined us she said, ‘I am very sorry, I have spoken with your Dr, and I agree with him that your baby has Hypoplastic Left Heart Syndrome (HLHS)’, and she wrote it on a bit of paper and without taking a breath, she started to rattle off statistics, and ‘facts’ about the grim outlook for our little treasure.

“She said: ‘There is no one in Australia over 14 with HLHS’, ‘The survival rate is only 50%’, ‘He will need multiple surgeries and the outlook for him will be very unclear’, ‘You need to consider your options, most people choose to terminate the pregnancy, it is a very tough condition’.”

A glimmer of hope

Angela’s baby in hospital after having open heart surgery

Feeling utterly devastated, Angela and Chris were then advised to meet with a different paediatric cardiologist, Dr Stephen Cooper, to discuss their options.

“We felt like we had just been hit by a bus. All our hopes and dreams for our precious little boy were shattered in just a few hours. We were lost. We had no idea where to go, who to talk to, or what to do next. We sat in the car and just cried.

“Thankfully, Dr Cooper got us in to see him less than 48hrs later. In hindsight, we realise how blessed we were to get such a quick appointment. Many parents sit in limbo between initial advice and seeing the cardiologist for much longer than we did. We felt in that time like we were grieving. It felt like we were experiencing the greatest loss of our lives.

“Driving to Sydney to meet Dr Cooper at Randwick Children’s Hospital almost felt like we were driving to a funeral. Grieving a little boy and a life we didn’t know he would have. But, we left that appointment with a completely different outlook. Dr Cooper opened by saying people come to me for one of three reasons: they are either here to confirm the diagnosis and will terminate the pregnancy on confirmation, they have no idea what they are doing and want information and advice, or they know that regardless of what I tell them they are keeping their baby and just want to know as much as they can.

“He asked us what category we fell into. We told him upfront that there is nothing he could tell us that would make us kill our baby. He understood, and he said, from here then we will just talk about what is possible, what you need to prepare for, and how we will get your baby through this. And he did. He spoke us through the surgeries, he made it clear that there were in fact people older than 14 in Australia, but surgeries were relatively new in medical terms here. He educated us on the condition and told us many happy stories about many clients of his who live great lives. He didn’t hide how hard it would be, but he gave us hope. He gave us determination and he gave us a sense of direction.”

Getting ready for birth

Angela smiles while holding her newborn baby

Determined to fight for their little boy’s life, Angela and Chris quickly decided to move to Sydney to prepare for his delivery with a team of specialists.

“We enrolled our older boy in daycare and based ourselves in an apartment waiting for the birth of our boy.
My waters broke at 39 weeks. While they were happy to allow a natural birth, they couldn’t induce me and after 14 hours of labour not starting after my waters breaking, they needed to take me in for a c-section.

“It was a Friday morning and they needed to ‘get him out while all the A grade doctors were around’. We were told at this point that he might need to go straight into open-heart surgery. When he was born he was taken from me. I didn’t even get to kiss him, touch him, or anything. It would be over 24 hours until I saw and touched my baby, Matthew, for the first time.

“Because it was Covid times, I wasn’t even allowed a visitor for this time. My husband went with our baby to the children’s hospital and I waited alone in the maternity ward, having just had a c-section with no company, no person at all to be with me, and no nurses because I had no baby and no husband. My baby wasn’t even here. It wasn’t until I could stand up and move around on my own that I was allowed to make the trek down to the children’s hospital to see my baby.”

1 in 200 cases in the world

Angela, her partner and their baby

To make matters worse, Angela was also suffering from incredibly painful migraines caused by fluid leaking from a punctured spine during her c-section epidural.

“This went on for three days before anyone believed me that there was an issue. The midwives in the maternity ward thought it was just because of my emotions. It was Matthew’s nurse in the Paediatric Intensive Care Unit that picked up what the issue was.

“Matthew was taken to the Grace Centre for Newborn Intensive Care, but he was only there for 24 hours before being transferred to PICU. He was on a ventilator and required open heart surgery at 48 hours old. A surgery that took 12 hours – 10 hours on bypass. They said for a baby in his condition and with the complications he had, the survival rate was only 50%.

“He spent three months in the intensive care unit, at which time he faced so many complications that further testing was done and he was diagnosed with Jacobsen Syndrome (this was incredibly traumatising, the doctors told us our baby had a severe chromosome abnormality before they had done any research and they told us it could mean Matthew was incompatible with life and wouldn’t survive, without even knowing what it was). He is one of 200 documented cases in the world for JS. This brings other complications such as blood disorders, intellectual delay, and disability, gastrointestinal issues, etc. He also had a brain bleed as a newborn as a result of the blood disorder.”

A miracle survival

Mathew sitting on the beach as a toddler

Little Matthew and his parents spent the first six and a half months of his life in Westmead Children’s Hospital, undergoing multiple surgeries and treatments.

“In that time he also had stomach surgery for pyloric stenosis (a narrowing of the opening from the stomach to the first part of the small intestine which causes projectile vomiting), two cardiac arrests where his heart fully stopped and needed CPR, and a second open heart surgery at 4 months old.

“He is now 2 years old. While he is micro (only the size of a 10-month-old), he is now crawling, learning to stand, and starting to communicate in his own way. He is complex, he keeps us on our toes, but ultimately he is the most joyful child you will ever meet.

“He has the best chuckle in the world. He had over 16 hospital admissions last year alone, but we take it head-on now, he takes it like a champ.”

Matthew with a birthday cake

Angela, baby Matthew, husband and big brother standing under tree

Angela and Chris are now making the most of life as a family of four by taking notice of ‘big magic in small moments’. Just this month, Matthew was able to try food for the first time after being tube-fed since birth. A happy milestone for all, with many more magical moments yet to come.

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