CW: This story involves NICU and a life-threatening condition.

With the birth of my firstborn, I had an emergency c section. With my second pregnancy, I was adamant that I wanted a VBAC. Because the birth of our daughter was only 20 months prior and I had pregnancy hypertension, I was induced at approximately 39 weeks. 

I was induced with a balloon. It had only been in a few hours before it fell out. To the nurses surprise, contractions started not long after this and it wasn’t long before I was making my way to the birthing suite. 

My contractions started to intensify and were very frequent, the gas was doing nothing for me and I requested an epidural. After I had my epidural things felt a lot more calmer, though it did slow down my contractions. After a few hours, things amped up again but it felt like the  epidural was doing nothing. It was later we discovered that it had fallen out. It felt like an eternity before the anesthetist came back to administer a second one. By this stage I was a wild animal, roaring through a pain that I had never experienced before. It didn’t help that Ollie and I were spine to spine. 

It wasn’t long after the second epidural that I felt a need to push. I had two doctors and a midwife with me at this point. After pushing for about 40 minutes, Ollie’s heart rate started to  drop. I was told that I had no other choice than to have an episiotomy and forceps delivery. 

When they handed Ollie to me, he wasn’t moving. He thankfully came to after a few stern back rubs from the nurse. 

A few hours after Ollie was born, I noticed that he was breathing quite erratically. I rang for the nurse and she reassured me that it was quite normal for newborns to breathe a little faster. 

Because I had lost a lot of blood, we spent two nights in hospital before being discharged. 

A few days after being home, I noticed Ollie’s breathing hadn’t slowed down. This, combined with a mild temperature prompted me to call the midcall after hours number. The nurse who I spoke to, told me that he probably had too many layers of clothing on.

A few days after this, a midwife that I had seen in the days prior for help with feeding; sent me a message to see whether Ollie’s latch had improved. I msged her back and said that I had no improvement with his feeding but my main concern was that he was breathing fast. I asked if I could send her a video. She suggested we FaceTime so she could look for herself. She confirmed that Ollie’s breathing definitely wasn’t normal. She suggested we get in to see the GP that day. I rang our regular Dr but they had no appointments available. At this point she had already looked up the wait time in emergency and suggested we head straight there. 

When we arrived in emergency, we went straight through. It was at the peak of Covid so my husband wasn’t allowed to come in with us. We were taken to an isolation room where we both had to have PCR tests. A Dr who assessed Ollie thought that Ollie’s work of breathing may have been due to pneumonia. This scared the hell out of me! 

Once we got the all clear for Covid we were moved onto a ward. It was here that Ollie had an echo of his heart. I could tell by the look on the Dr’s face that she didn’t like what she was seeing. She said that his heart was almost the size of his chest. She hugged me and I could see she was fighting back her own tears. Because we don’t have any pediatric cardiologists in Canberra (at least not at that time) she FaceTimed Ollie’s echo to a cardiologist in Sydney. This particular cardiologist was due in Canberra the following day for a course and agreed to see Ollie first thing in the morning. 

The cardiologist from Sydney arrived early the following morning. After assessing Ollie, we were told that he needed to go to Sydney children’s hospital in Westmead and that they would organise for him and I to be airlifted later that morning. He advised us that Ollie was too young for a heart transplant and that they may just be taking him to Sydney, to keep him comfortable until he passed away. Words that will forever haunt us. 

We had very little time to race home and pack a bag for ourselves, Ollie and make arrangements for our daughter who was only 20 months at the time. 

When we arrived in Sydney we were taken straight to the PICU ward. We met with an amazing cardiologist who oversaw Ollie’s treatment for the duration of his stay. She did an echo and an ECG and it was determined that Ollie had Myocarditis. 

Ollie was later transferred to NICU where he was placed on cpap. Even though he was so tiny to us, he seemed so huge in there. He was surrounded by babies that were so premature, they could basically fit in one hand. 

In the days following, Ollie showed very little signs of improvement. In fact, he was getting worse. Because he had so much fluid on his lungs, he was limited to 70ml of milk a day as any additional liquid was making his body work harder than it could. He was essentially starving! 

With Ollie showing no signs of improvement he was moved back to PICU. He underwent surgery to have a central line to his heart. Because he was on limited fluids, it was extremely hard for them to find a vein. They had to shave his head to allow for a cannula. Days went by with no improvement and after multiple blood transfusions, the medical staff decided the best thing for Ollie was to take over his breathing and intubate him. This by far was the toughest thing for us, as we couldn’t stay with him when they did it. We were told that if it was unsuccessful, he would need to go on bypass. As we kissed him goodbye, we passed at least 8 surgeons who were lined up along the hospital corridor outside his room. Waiting on stand by, if things didn’t go to plan. I don’t think either of us have ever cried so much in our lives. The procedure felt like it took an eternity, as we patiently waited for the phone call to be allowed back to see him again. 

In the weeks following, Ollie was still showing no signs of improvement. His heart rate was still so high. It wasn’t until about his 6th week there, that he started to turn a corner. It was exactly what our cardiologist had said to us at the beginning… like a switch turns on in their body and they decide ‘I’m going to get better now’. Ollie remained intubated for a little while longer until the medical staff were comfortable that he could breathe on his own. 

When Ollie came off the intubation, he remained in PICU before being transferred to the heart ward. Because Ollie had been on morphine for the period he had been intubated, he was seriously addicted to it. It took a good week to get him off the morphine which required many ‘breakthrough’ doses as he was inconsolable without it. Which raised his heart rate to very dangerous levels. 

As Ollie had been on restricted feeds, he weighed less than his birth weight. I was given medication to try boost my volume of milk. I expressed around the clock, this was mixed with formula to try fatten him up before we were allowed round take him home to Canberra. 

Today looking at Ollie, you wouldn’t know that he had such a rough start to life. He is cheeky, funny, boysterious (with no off switch), but affectionate… perfect in our eyes!  Ollie will likely need to have regular check ups with his specialist for life…a small price to pay to have him home and healthy. We definitely wouldn’t have been able to get through everything without the support of our amazing family and friends; and Ronald McDonald house Westmead, where we stayed for the duration of Ollie’s time in hospital. 

What do you wish you knew before birth?

Educate yourself. If not through formal courses, pages like the Tiny Hearts page on instagram. If I had followed the Tiny Hearts page prior to having Ollie, I would have known what to look for with work of breathing. They provide some amazing content on this and so much more! 

If you could, would you do anything differently?

Trusted my gut when I felt something wasn’t right. I wish I had asked for a second opinion on Ollie’s breathing immediately after he was born. I would have also asked for a more senior doctor to have carried out Ollie’s heart check before being discharged from hospital following his birth. 

What advice/honest truth would give a mama-to-be about birth?

Go with the flow, don’t rely on your birth plan going to plan and if you feel something isn’t right, advocate for yourself and your baby.