Henry's Story, 37+ Weeks

Miracle Mum, Erika shares Henry's story.

"When Henry was three weeks old, it was a Thursday morning, he woke up completely unsettled and in pain. It came from no where. It was like he literally woke up on the wrong side of the bed. Throughout the day, he refused his feeds, reduced bowel movements, his tummy was rock hard and was in pain if I moved him or picked him up. I knew he was too little for panadol, so I took him to town and bought every remedy from the chemist for poo pains! Which is what I initially thought the issue was. That evening, as I laid him in his bassinet to go to sleep I had a sick overwhelming feeling come over me. I picked him up and walked into my husband and told him I needed reassurance, I want to take him to the hospital.

Once arriving at the emergency department the doctor there told me “he looks hungry, why don’t you feed him and I’ll come back in half an hour and check him, then you can go home”. I was humiliated - I thought I was overreacting and was an overwhelmed tired mum who obviously was just having a bad day. I attempted to feed him again and of course he refused. The paediatric doctor came in before we left to assess Henry. Instantly, she looked at me and told me she was taking him to resus, she was going to start a series of tests. A lumbar puncture, bloods, cultures, gas and a catheter. He went from a “hungry” baby to a critically sick baby within seconds. He was taken to resus and they started poking and prodding for hours. I rang my mother in tears. It was late in the evening and I couldn’t bear to watch the lumbar puncture, or any of it for that matter. So, being on the phone to my mum was the comfort I needed to push through. When they were finished, they came and grabbed me and took me back to see Henry. There he laid exhausted, with cords coming from every direction of his body. He was connected to a webcam to two major hospitals watching him and I was told a helicopter was being prepared to be flown out to a major hospital. Everyone who was on call was called in. I was told he either had something in his tummy about to rupture or fighting a virus. After xrays and ultrasounds ruled out any ruptures they knew he had contracted a virus and had to figure out which one.

The helicopter arrived at 7am. I cried all night long, my eyes were bulging. I was so tired I literally couldn’t talk . My husband ran in and cuddled me, he organised family to look after our eldest daughter and was meeting us at the hospital alongside my mother in law. We flew to John Hunter Hospital. During the flight, the doctors were making different hand gestures to each other about Henry’s health and by those gestures I knew they weren’t good. I knew they hadn’t spoken through the microphone because I would be able to hear them. They could see I knew something was wrong and tried to reassure me with a thumbs up. I turned away and looked out the window. There was nothing I could do to help.

When we arrived at the hospital, everything was a blur, all I remember was landing on the helipad, Henry was getting wheeled off and there was an audience of people starring. It was a blur, I can’t remember walking from the helipad to PICU. I remember a nurse making a bed for me beside Henry’s resus crib, and told me to shut my eyes until my husband arrived. An hour passed and my husband and mother in law arrived. I jumped up as if I hadn’t closed my eyes. We all stood by Henry and looked at each other. His numbers where all over the place, and before we knew it we were watching Henry pausing his breathing. Holding for 15 seconds at a time. It was then we were forced from the room and Henry was placed in to an induced coma and put on a ventilator. When we were reunited, it was almost like a sigh I relief. He was finally asleep, he didn’t seem to be in pain, the machines where breathing for him so he no longer had to struggle. From there it was a waiting game for a diagnosis.

Henry stayed in a coma for three days. Something I never knew about ventilated babies, is that they still cry! They’re not “awake” they are completely mute, but all of a sudden you can see his little face silent and screaming. We would snuggled our hands next to him and hush him, let him hear us and he instantly knew we hadn’t gone anywhere, we were right by his side the whole time. The care in PICU is second to none, I can't even explain how amazing the unit is and how magical those nurses and doctors are.

By day three it was time to slowly wake Henry up. It took several attempts with caffeine to wake him and being re-sedated. They needed him to be awake, but groggy enough to tolerate the tubes. I remember when we were finally successful and he looked at us. A sigh of relief, you did it baby boy! You did it!
The next day the tubes came out and his NG tube was only still in for backup, otherwise I was back to breastfeeding, snuggling, and holding by baby boy in my arms again. Henry stayed in hospital for a few more days to recover. We were taken to the ward for Henry to recover there. And shortly after we could take him home with us!

Henry’s diagnosis was Parechovirus - a life threatening cold in babies. My baby almost died from a cold. It came so quickly and was aggressive. I wish no other parent has to go through anything like what we faced. The parechovirus is part of the meningitis family, it can cause brain damage in babies. It serves as a massive reminder, DO NOT KISS THE BABIES! That’s a job for mummy and daddy only! And do not visit babies if you are or have been sick - stay away!

Henry is 10 months old today. Although he is meeting all his milestones, he has chronic respiratory airway illness which is yet to have a finalised diagnosis. They’re thinking the parechovirus has a lot to answer for for Henry’s ongoing respiratory disorders. But at the end of the day, our baby boy is happy and he is with us earth side; we will never take that for granted and hold both of our babies tight every day."

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