“He is more likely to pass away than live”: the story of baby Ledger

Hannah’s pregnancy started out perfectly. She was nervous but extremely excited to be carrying her first baby and never expected any complications. But at just 10 weeks’ gestation, Hannah started bleeding and rushed herself to the hospital. She was seen immediately, had a quick ultrasound which showed a healthy baby, and was sent home with a diagnosis of implantation bleeding. From that moment until 22 weeks’ gestation, she was in and out of hospital weekly with issues and was continually told her discomfort and bleeding was normal and to go home. But at just 22 weeks, Hannah experienced a pre-term premature rupture of membranes (PPROM). Unbelievably, her doctor once again told her she could go home and arranged an appointment in four weeks. Thankfully, Hannah refused to leave the hospital and demanded a new obstetrician. He took one look at her ultrasound and blood work and diagnosed her with a subchorionic haematoma, placental abruption, incompetent cervix (measuring 21mm), PPROM and explained that she would need to be flown to a hospital in Adelaide (from Alice Springs). The hospital wanted to wait until Hannah was 24 weeks’ gestation to send her, but luckily Hannah’s Dad fought for her and she was sent on an emergency flight to Adelaide at 23+1 weeks.

Emergency flight with the Royal Flying Doctor Service (RFDS) from Alice Springs to Adelaide

Hannah described the flight as “crazy”. Her partner Peter was at work with no idea what was happening and he jumped on the plane at the last minute – they both had nothing with them but the clothes on their backs. When they arrived at the hospital at about 7pm, Peter was kicked out in the freezing cold with no place to stay, no car and no clothes. When he left, Hannah felt so scared and completely alone. She was put in a delivery suite because the ward was full, and at 2:30am she was woken to a woman screaming in labour and was swapped out to her (still warm) bed in the assessment suite. Hannah spent two “awful” days in the assessment suite on bed rest with no TV and no distractions, until she was finally moved to the maternity ward. Three more days passed and at 11pm, she remembers feeling “really, really sad.” She wrote a letter to Peter contemplating the lif­e they would lead if they lost their baby, and then she had her first contraction.

The contractions got worse and worse. Hannah remembers feeling “horrific” pain for 7 hours and Peter wasn’t answering his phone. By this stage, her parents were also in Adelaide at a hotel, so she called her Dad to tell Peter to get to the hospital. She was eventually moved to the delivery suite…the pain was unbearable and she was beyond panicked. The staff told her they would be performing a c-section, and then they all left. They came back 20 minutes later asking if a strange man was her partner, to which she politely screamed “no”, and again they left. She was alone, completely alone in a room screaming for help in so much pain. Eventually, Peter arrived and heard Hannah screaming, and she heard a nurse say “you can’t be in here”. Hannah screamed at the nurse and said the baby is coming, to which the nurse rolled her eyes. No-one believed she was in labour because she wasn’t dilated. But just moments later a doctor arrived and performed a spec exam, and Hannah felt her baby’s head pop out. She went into shock, and before she knew it, Peter was pushed to the back of the room, alarms were blaring and the room was packed full of people. She had to wait for the neonatal team to arrive to finally be able to push. “It wasn’t hard, he came out easily, and Peter swears he heard a tiny little cry.”

Ledger Brook Lewis was born at 23+6 weeks on July 4th 2016, weighing 660g (1 pound 4 oz) and 30cm long. He was ventilated immediately, stabilised and in the NICU within 6 minutes. The neonatal team were flawless. Hannah will never forget the moment she saw her baby boy for the first time…so tiny and red and unfinished. Some Mum’s might say “I knew my baby would be fine”, but she didn’t. She didn’t think he would make it. She didn’t think they would be lucky enough to ever take him home. But Hannah was given so much confidence by the medical team in those first few days, and they continually pushed Ledger to work. He was extubated after just 12 hours and remained on CPAP for 5 days before requiring re-intubation and ventilation. He went back and forth from the ventilator to CPAP 5 times, with 6 rounds of steroid shots, before he finally made it to high flow. But this is where things took a turn for the worse. Hannah got cracked nipples from the constant expressing and then developed mastitis, which led to septic shock. She remembers sepsis feeling like “my whole body had gone into slow motion, a world where it’s freezing cold and everything is muggy and cloudy.” At the same time, Ledger was also getting really, really sick. Hannah was rushed to ICU where she had IV lines in both her arms and hands, a catheter inserted, countless x-rays and four different kinds of antibiotics pumped through her. It was eventually confirmed that Hannah had Group B Streptococci (GBS), and poor baby Ledger had caught this through her breastmilk. It took 5 days for the antibiotics to work for Hannah and she was in critical care for almost two weeks. She spent her birthday in critical care, 1600kms from home, with her son losing his battle to live.

Hannah’s first cuddle with Ledger at 4 days old

 Ledger holding on to Dad’s finger during their first cuddle

Both Hannah and Ledger started to get better, but again this was short lived. Their lungs both started to fail. Hannah was rushed for an MRI and the dye made her unwell. Her lungs were consolidated, she required oxygen support and it was painful to breathe. Meanwhile, Ledger was maxed out at 100% on the ventilator as well as nitric oxide and was only saturating in the 70’s. He was losing. He had 12 rounds of both kinds of steroid shots and was given a drug to paralyse him, but his poor little veins weren’t cooperating. One of the neonatologists pulled Hannah and Peter into a room and told them that Ledger was more likely to pass away than live. Another doctor told Hannah to “let him go with dignity.”  Eventually, on August 16th, Hannah and Peter made the heartbreaking decision to give him a few more days to fight before letting him go on August 19th. They had him christened and their family all drove from Alice Springs to say goodbye, including Peter’s other children. The very next day, Ledger’s condition miraculously started to improve, and by the 19th he was put on CPAP. By this stage, Ledger was almost 2 months old. He had received 10 blood transfusions, suffered 5 bouts of sepsis, and had needed to be resuscitated 5 times. He continued to stabilise and was eventually weaned from CPAP to high flow.

Ledger’s first outfit

However, on September 28th, there was yet another scare. A big storm hit Adelaide and the back-up generators failed at the hospital. All of the breathing machines turned off and they weren’t battery operated, so Ledger was hooked up to an oxygen cylinder on 4 litres of straight cold oxygen (with no humidified air) and his body temperature dropped dramatically. The power was off for 3 hours, and there were about 20 babies relying on breathing machines that had failed, so the hospital staff couldn’t focus their attention purely on Ledger. Hannah said it was “crazy chaos.” The next day, Ledger was again resuscitated 5 times, requiring 8 litres of high flow, more steroid shots and another infusion.

Peter and his Dad cutting off Ledger’s patient ID bands before finally heading home

 Ledger now: 8 months old (4 months corrected)

Hannah has many lasting memories from Ledger’s terrifying rollercoaster start to life, but the parents she met and the nurses that stood by her are the ones that will stay with her forever. They became her family when hers were too far away. Hannah endured a lifetime of unbelievable ups and downs in just a few short terrifying months, but she learnt that no matter how alone you might feel, you are never alone. She learnt that the world is good and kind people do exist. But mostly she learnt to never give up hope, because miracles do happen. Ledger is proof: the ‘one in a million’ baby who defied all the odds.

Thankyou Hannah for sharing your incredible journey with me. You are one of the strongest people I know. And just like that hill, you can now conquer anything.

Disclaimer: These are the thoughts and opinions of Hannah and reflect her personal recollection of her story, and do not in any way represent Miracle Mumma

If you have a story to share and would like to be featured, please email me: miraclemumma@gmail.com. Together we can raise awareness of premature birth and offer hope to others who are going or will go through the same <3