Laying in the delivery suite in labour, hooked up to monitors and drips, my mind was spinning as I prepared to give birth to my twin boys at 24 weeks gestation.
Only 5 days prior, our world had been shattered when we found out that our son Anthony’s heart had stopped due to severe growth restriction.
During my pregnancy, I never imagined I would give birth at 24 weeks. I recall a conversation with my obstetrician about babies born at this gestation having major life complications. I didn’t want to be in labour. I wanted to keep Alexander inside and growing. I could hear babies being born and crying in the rooms next to me, and I cried, not knowing if my one surviving twin would be born alive.
On 22 December at 5:35 am, I gave birth to Alexander and Anthony at Royal North Shore Hospital. Alexander was rushed into the hands of the NICU (Neonatal Intensive Care Unit) doctors and nurses as they worked to intubate him and keep his body temperate warm in the Giraffe Omnibed. Anthony was wrapped beautifully in a baby blanket. We spent the next few hours holding him, kissing him and telling him how much he meant to us as we stared down at his beautiful little face and examined every crease on his body.
The first time I saw Alexander, I was shocked. He was so small at 490 grams, and every part of his body was covered with medical equipment to keep him alive. I remember thinking we should delay Anthony’s funeral for a week as it was unlikely that Alexander could survive, but my heart was aching so desperately for him to live. I couldn’t bear the thought of losing another child.
On day 3, Christmas Eve, we received our first lot of bad news. Alexander’s head ultrasound showed he had a grade 4 brain bleed, which could lead to permanent brain damage. Days later, it was discovered he had an open Patent Ductus Arteriosus (PDA), and the doctors wanted Alexander to participate in a trial that was being carried out. We found ourselves having to make life-changing decisions that we were unprepared for at a time when we were trying to grieve yet have hope. I started praying, and I didn’t stop. Over the next week, it was confirmed that the bleed in Alexander's brain was resolving and, a few months later, his PDA had closed.
We stayed in the hospital with Alexander for 10 days. I was expressing milk, and through the night, I would sit next to his incubator, talking to him, letting him know I was right there. Coming back home and not being close to Alexander was incredibly difficult. I would call the hospital regularly to check on Alexander’s condition, and I would be nervous every morning walking into the NICU, afraid that he had passed away.
One of the hardest days came after a couple of weeks in the NICU. Alexander had caught a staph infection, and his oxygen requirements were nearing the maximum. He wasn’t expelling the carbon dioxide from his body and was in real trouble. I sat in the room helplessly observing the panic on the faces of the nurses as they pushed the alarm to alert the team of doctors that worked to resuscitate him. On this day, the doctor came and informed us of the severity of the situation, including the need for steroids and high-frequency ventilation to try to give Alexander a chance of survival. We were advised that it was not too late for us to terminate the care of our son. This is when I broke down. I had spent the last two weeks bonding with this little person, reading to him, singing to him, looking into his eyes and holding his hand. I couldn’t imagine letting him go now, and the thought of making that decision was too overwhelming. And so, I decided to embrace whatever complication was to come.
Two months passed, and Alexander hit his first milestone – he was 1 kg. We couldn’t have been happier. Having chronic lung disease meant his breathing support and oxygen requirements changed frequently, but overall, he was stable. We were taking two steps forward and one step back. I would describe the journey as brutal.
Then, days before his 100-day celebration in NICU, he was diagnosed with Retinopathy of Prematurity (ROP) and was at severe risk of being permanently blind. Once again, my heart sank. He needed surgery. The first attempt failed, so the second surgery involved the vessels getting lasered and, fortunately, they grew back normally. We continued to face many more ups and downs, with nine blood transfusions, six fractured bones and feeding difficulties.
I spent all day, every day, at the NICU, close to Alexander. It was during this time that I spent hours talking to nurses, and this is when I first heard of the Humpty Dumpty Foundation. It occurred to me that most of the equipment Alexander needed was donated to the hospital by Humpty and its supporters. I knew instantly that I wanted to reach out and imagined one day participating in their events and helping to contribute to the cause.
Alexander was discharged from the hospital on oxygen after 147 days. It was Mother’s Day, and it was the greatest gift that I could have received. We felt relieved and had a sense of achievement. We were so excited for Alexander to see the world outside of the hospital walls.
We learnt quickly that a baby born at 24 weeks comes with challenges. We struggled to get Alexander to drink his milk, and this became very stressful. We also didn’t leave the house, as we were too afraid of Alexander catching a virus.
Alexander had been off oxygen support for 7 days before he required inguinal hernia surgery at The Children’s Hospital at Westmead. Unfortunately for him, he was also fighting a rhinovirus at the time of the surgery, so his supposed day surgery turned into 2 weeks in the hospital, in need of more respiratory support.
At Westmead, I again came to see the Humpty Dumpty posters and stickers on the equipment. Once again, my desire to support the Foundation grew stronger, knowing they were helping children everywhere.
Later that year, we celebrated Alexander’s baptism and first birthday. On this occasion, we celebrated by donating to the Humpty Dumpty Foundation in place of having a bonbonniere for our guests. Knowing the cost of medical equipment can be up to $100,000, we wanted to help and give back to the Foundation that had done more for us than they could ever know. They gave us the chance to become a family.
The following May, my husband Marco decided to participate in the Balmoral Burn, and we started fundraising for the event. Marco’s workplace, Meriton, got behind him and sponsored a corporate team. We successfully raised $17,000 – the best part being that we were overwhelmed with support from our family and friends who also participated.
As for our little Alexander, he is now full of life. He is an incredibly happy boy who loves to socialise, runs around all day, and loves eating. For now, he has a mild delay, and we continue to follow up with practitioners for early intervention. He has filled our home with so much love and hope. His determination to survive at 490 grams with all the odds stacked up against him continues to inspire me every day.
By Varteni Guardala