Published On: Sat, Oct 11th, 2014

Expect The Unexpected

From the first time you discover you’re pregnant it starts………. the planning, the advice and the anticipation. You do everything you can to ‘be prepared’ but the reality is you never really are. I found this to be especially true when I gave birth to a baby with unexpected health issues. To take you back to the start of the story I thought I had every little detail ready to go for the arrival of my first baby. I was a financial planner, so planning was ‘my thing’.

Expect The UnexpectedWhen the big day arrived I even remembered to stop on the way to the hospital to buy the days newspaper, as a keepsake for the new baby. After several hours wait at the hospital, I was finally wheeled into the operating theatre to have a caesarean. I remember already feeling numb with excitement and nerves before they had even given me the drugs. Then as quick as you like he was here!! Our beautiful son had been born. He was presented to me at arm’s length by the doctors, wrapped by the nurse and was then wheeled away with my husband following behind. It all happened so fast. While in recovery I kept closing my eyes thinking ‘does he look like the name we chose?’ He seemed so perfect in those first few moments. There was no sign of the things to come.

It seemed like an eternity before I was wheeled from recovery and back to the ward. However instead of heading back to my room I went straight into the special care nursery. He was having breathing problems. The nurses were saying this was “all very normal for a caesarean baby.” I reached out and touched his tiny foot. Then my blood pressure dropped so I was rushed to my room to rest. As the afternoon progressed I began to feel increasingly sore from the operation and frustrated I had not been able to go back to the nursery. Even though they didn’t encourage husbands to stay, I begged mine to so he could give me updates on the baby. He complied and slept on the couch. I felt at ease knowing he was there, so much so that I got to sleep quite easily that night. I slept the whole night through. Had I known what was in store the next day I would have let him go home so he could have also had a good night’s sleep.

The next day I was allowed go to the nursery to see him again. I was shocked to see he was now in a full humidicrib – no one had warned me about that. I gazed at him sleeping so peacefully. He still looked so perfect. The doctors and nurses were becoming increasingly puzzled as to why he wasn’t improving.  They were still however telling us ‘not to worry’. I found this a very unhelpful thing to tell me – don’t all mothers worry about their children I thought? This was something I had learnt about motherhood much sooner than I would have imagined.

By that evening they had decided to call in a specialist mobile medical team to see him. Suddenly, I was wheeled back into the nursery to see them placing him into a huge enclosed crib. He was then to be transferred to the Children’s hospital for further testing. I was not permitted to go with him in my post-op condition; I had not yet held him. I was left wondering if I was ever going to see my little boy again. It’s the worst pain I have ever felt.

A few hours later, very late at night, my husband called me to tell me our baby had a heart condition. It was very serious, he said, but he was OK for now and I should get some rest. WHAT?!? I remember them checking the heart at the 19 week scan and it was fine so how can this be?? I could feel tears flowing from my eyes uncontrollably. My Mum was with me, she hugged me, but there was little else she could do to comfort me. I was given a sleeping tablet to calm down and get some rest.  Looking back, this was my darkest hour.

The next day I checked myself out of hospital, against the doctor’s advice, as I just had to go and be with my boy. My Mum nervously drove me to the Children’s hospital. My minister met me in the foyer and wheeled me through the hospital, past many sick children, to the newborn ward. There was my baby but he looked very different from the day before. He was covered in cords and monitors but he still didn’t look sick like the many other children I had just rushed past. Then I noticed was he was sucking a dummy – I wasn’t going to ‘do’ dummies and now even that small choice had been taken from me. Finally for the first time my boy was placed into my arms. I hugged him, kissed him and whispered to him that his Mummy was there now, and it was going to be OK. I didn’t want to let him go. This was a turning point for me. It was the first time I remember feeling happy amidst the deep pain within.  I was so in love with this little guy.

For the next few days my husband and I were bamboozled with so much medical information as we tried to get our head around his condition. He was going to need open heart surgery. I was struggling to get over the shock that this complication could happen. It was actually more common than I had ever imagined. We were told 1 in 6 babies born in Australia are born with a heart condition. Funny, in all my pre-baby preparations, that information never came up.

There was very little we could really ‘do’ for him other than sit at his bedside. We were occasionally able to hold him but not for long periods. He was washed down by a nurse every few days, making those bathing lessons from pre-natael classes feel rather redundant. He wasn’t able to breastfeed but I had to go off to a little ‘pump’ room every few hours. This room was affectionately known as the ‘Dairy’ and that’s exactly what I felt like when I was in there. Producing milk for a baby who could not drink it was an empty and depressing feeling. I knew I wanted to breastfeed him once he was better, so it was necessary to keep my supply up. It was hard work though both physically and mentally.We had sent out a typical happy text message of his birth, a few hours after his arrival. Now I felt that communication of any kind was too hard, so our friends were directed to contact my father-in-law for updates on his condition. In the first week we only had family members and one or two close friends, dropping in on us. It was too hard to ‘keep it all together’ for anyone else. As the weeks went by we slowly had more and more visitors. Some days I enjoyed the break and hearing about what was happening in the ‘outside world’ but other days I really didn’t feel like seeing anyone. During the day, when he was sleeping, I busied myself with making him his memento book, recording all that was happening to him, his visitors and the gifts he was receiving. This made me feel I was doing something productive.

At Day 12, as it was referred to (ie he was 12 days old), he underwent open heart surgery, a 5 hour procedure, to repair his heart condition. It was too hard to sit at the hospital this whole time; I needed fresh air so my husband and I went to a café for lunch. We didn’t talk much; there were just no words to say. It felt like we were both just holding our breath until we heard he had made it through the operation. We went into see him in intensive care, he looked so puffed up on drugs and his scar was so fresh and sore looking but he was alive – words could not express our joy.

During the next few weeks of recovery a further complication occurred and when he was 28 days old he underwent another operation to have a pacemaker inserted. This was only a one hour operation and I wasn’t as worried this time round – amazing that in the space of a few weeks I was already able to deal with the situation better. To our sheer amazement it was just a week later when we were allowed to finally take our little boy home. He was 5 weeks old.

It was rather surreal being home. His whole life he had been attached to monitors 24/7 which showed all sorts of information. Now at home with no monitors, we had no way knowing what his heart rate or his oxygen levels were at any given moment.

The hospital had assured us that they would not have sent him home if he wasn’t ready to be treated like every other baby. So that’s what we tried to do. As we began to see more of our friends I was surprised to find it that it was quite easy to explain all the medical facts and how his pacemaker worked and so on. I didn’t talk much about my feelings though – that was much harder to do.

In those early weeks I joined a local mothers group which I enjoyed as it made me feel like I was just like any other new Mum. At times it was hard to be patient when other Mums were worried about the sniffle their baby had, given how ill my baby had been, but I am glad I was as 6 years on those ladies have become great friends.

People have often asked me how I coped and I wish I had an answer but sometimes I don’t really even know myself. My faith was a great comfort and we were given a huge deal of support ranging from meals to a listening ear of a friend. With hindsight there are things I may have done differently but the main thing is I just did cope. The biggest healer for all of us has been time. Time has brought us confidence and greater perspective and has been what has allowed me share this story, as a few years ago I probably wouldn’t have been able to.

I hope by sharing my journey I am able to give people some insight into my experience of giving birth to a sick baby. Six years on it still breaks my heart that he has to live with this condition, but it does not consume my every thought. When he is running around and being a boisterous 6 year old boy it barely even crosses my mind. Despite how hard those first few weeks were, I loved becoming a Mummy and our little boy is such a blessing to us. He has gone through so much in his young life. The way he takes it all in his stride is an inspiration to me, reminding me to take nothing in life for granted and to always be thankful.

Celia Pearce 2013
Copyright  Mummy Weekly 2013

Celie PearceCelia’s son Liam was born with an unexpected illness. She reflects on those early days in the hope that it may bring some comfort to those that also find themselves with the unexpected.

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