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Both my babies were in hospital recovering from major surgeries at the same time

By Danielle Simone 6 min read

Believing God is with us in every situation gave me the assurance she needed to face one of the hardest situations any mother ever has to face.

There have been times in my life when I have seen how God prepares the way forward for me. There are many ways to hear from God, and everyone hears God differently. It could be an audible voice, just a knowing or a feeling different to others. Some people hear God talking through somebody who is speaking to them, through friends, listening to a sermon, while reading the Bible or even a billboard!

For me, it was through a dream that Trish, a friend from church, had more than two years before I fell pregnant again. Trish said she dreamed I gave birth to another baby, that it would be difficult at first, but it would all work out in the end.

At that time, we hadn’t planned on having another baby, but that was my heart’s desire. We had just given birth to our fourth child, Cameron. I laughed at her and joked that it wasn’t going to happen, and Cameron must be that baby. But she clarified that there was definitely going to be another one.

Two and-a-half years later, true to Trish’s dreams, l fell pregnant and I remembered her words: “It would all work out in the end.” That gave me comfort and a feeling of peace. l was all too familiar with the routine 18-week scan and knew they were taking much longer than usual. Before the operator said anything, my eyes filled with tears, as I knew in my heart that something was very wrong. 

The doctor explained that my child had what was called hypoplastic left heart syndrome and said it was the worst heart condition anybody could be born with. Roughly translated, this condition meant Nathaniel would be born with half a heart. The doctor advised us that the Australian Medical Association recommended we terminate the pregnancy. He said that our baby’s chance of survival was only 50 per cent with no guarantees, and that brain damage was highly likely with the risky surgery that would need to be performed once our baby was born.

My heart goes out to all the parents who hear this kind of news. What a dilemma to have to face: Deciding to live with the reality of aborting a baby who might survive or deciding to give the baby the chance of life but then being left with a disabled child.

Immediately, I started to research this condition. My discovery was that in all cases where this was fatal, there was other major organ damage or other complications. Nathaniel only had complications with the heart, which gave me the hope I needed that he had a greater chance of survival. I began to take Trish’s dream very seriously.

Me (top right) and my five children, taken when Nathaniel was a baby and Cameron was two years old.

Confidence in my faith grew, as l now felt so blessed to have had Trish share her dream with me. Going against medical advice, there was no doubt in my mind that we would keep our baby. We were willing to face whatever challenges lay ahead, even if “it would all work out” meant my baby would die earlier than I would have liked.

I also made a decision that I wasn’t going to allow this to affect my positive outlook on life. I refused to be a victim in this situation and neither was my baby going to be. Believing God had forewarned me, l decided to allow life to play out and to trust that God knew what He was allowing.

Many parents of babies born with this condition will attest to the rollercoaster ride we all experience. The first seven weeks of Nathaniel’s life was one crisis after the other. During the first week, his heart wasn’t strong enough to function on its own and he came out of surgery on life support.

It was during this week that I lost my confidence and realised that Nathaniel may not survive. I spent much time in prayer, pleading with God and listening to what I felt in my heart. I felt at peace whether or not Nathaniel lived.

There were many lifesaving operations to help his heart to function normally.

He had three cardiac arrests and had to be brought back to life.

He spent many weeks in ICU before bouncing back and forth between the ward and ICU.

Many friends and family members felt sorry for me as it was clear to everybody that it was only a matter of time before we lost Nathaniel. They were worried about me being so positive and calm, not sure how I would cope if Nathaniel didn’t survive. Even the doctors thought he wouldn’t survive. In fact, there was only one nurse who encouraged me in my faith, saying doctors are not always right.

During my pregnancy and even after, I received much criticism from medical staff for choosing to keep my baby and for allowing him to suffer so much.

I remember one day when Nathaniel arrested and flatlined in my arms. Alarms were raised and staff from everywhere turned up to save my baby’s life. All I could do was step back and watch on.

After Nathaniel was rushed back to ICU, the nurse who had saved him came up to me, demanding to know what was wrong with me. She told me that it was not normal for a mother to stay so calm while their baby had flatlined in their arms.

During this time, nursing staff called the psychiatric nurse to assess me, as they didn’t think I comprehended the gravity of the situation. I told them that while Nathaniel had breath, I would remain hopeful and not speak of him dying.

What was happening around me was very different to what I believed the outcome would be. But isn’t that what faith is? To believe confidently in something, even when it looks like there is no possible way? That’s when we know a miracle has happened.

Rather than focus on everything that wasn’t going right, I imagined what life would look like with my baby after leaving the hospital. I asked myself, What can I do for my baby that will help him?

I breastfed all my children and wanted to do the same for Nathaniel too. Nathaniel had a feeding tube for the first few months and throughout this time, I would go into the small rooms that were set up for mothers to express their milk.

Nathaniel turned a corner at seven weeks. His enlarged liver reduced to a normal size and later that week, he pulled out his feeding tube. I asked to feed him but was told by doctors and nurses he wasn’t strong enough to feed on his own, and so they put the tube back in. The next day, Nathaniel again pulled his feeding tube out. This time I insisted I have the chance to offer him a feed.

Nathaniel then went from strength to strength. I wasn’t allowed to take him home from hospital but instead would need to have him at Ronald McDonald House.

Later, Nathaniel’s specialist said he and everyone on the medical team were amazed that Nathaniel had lived, and were even more amazed he wasn’t brain-damaged. They called Nathaniel their surprise baby. I disagreed—he is our miracle baby!

Cooking with my boys

There were other miracles too. The situation allowed our extended family to be part of our lives by helping out with looking after our other children, leaving me free to spend the time at the hospital.

Four years later, while Nathaniel was recovering from his third and final operation, doctors found his heart was failing. While we were in discussions of why he needed more surgery, my daughter called me to tell me Cameron was suffering stomach pains and had been vomiting.

Later that day, when Nathaniel was getting ready for surgery, Cameron was brought into emergency to get checked. That same night, Cameron was also wheeled into theatre. His appendix had burst. I had wondered how I would balance my time giving Cameron my attention too, with Nathaniel at the hospital. Now I had both boys with me in the one place.

Both boys had lifesaving operations at the same time. I received many compliments from all the hospital staff for how calm and composed l remained throughout the ordeal.

Cameron (left) and Nathaniel in hospital, recovering from their respective surgeries.

We all have our own set of beliefs about what faith is. I have found such strength through remaining calm and centred. With God’s help, l have learned not to make decisions in an emotional state, and by coming back to calmness, I find l am able to concentrate better and make better decisions.

I believe life is to be enjoyed no matter what we go through. I am now so passionate about helping women improve their coping skills, no matter what their faith is. They too can stay strong, calm and centred with whatever life brings them.    


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Danielle Simone works with women who feel stuck, helping them to find enjoyment in life. She is an author, life coach and mother to five children. Createthehomelifeyoudesire.com.