Christie Puyk, 26, Narre Warren, Vic
I felt a surge of love as I scooped my new bub into my arms. With sparkly wide eyes and a cute button nose, she was perfect.
Looking up at my fiancé, Keith, 26, we both grinned with excitement. We were so thrilled about being first-time parents to our new baby, Michaela.
Less than a minute old, she was still covered in vernix, the waxy like substance from labour. One of the nurses came over with a cloth to gently wipe it off while I enjoyed my first hold.
‘Is that normal?’ Keith asked the nurse.
Still delirious after child birth, I didn’t think too much about what he’d just said.
The nurse took a closer look at Michaela’s head and went to speak to a doctor.
Suddenly I felt tension in the room and my heart began beating faster. ‘We just need to take Michaela for some checks,’ said the nurse, scooping up my girl.
A feeling of dread surged through me. ‘What’s wrong?’ I asked Keith, feeling frightened.
‘She’s okay, she’s all right,’ he said soothingly, but he couldn’t disguise the horrified look on his face.
What had he seen?
Then two more doctors arrived and started to look over our precious baby. A few minutes later they had some bad news. ‘We need to take Michaela away for some tests,’ said the nurse.
They said we could have a little hold before she was whisked away. Michaela now had a piece of gauze covering the top of her head and bandages keeping it in place.
Why have they covered her head? I thought.
Looking into my bub’s eyes, I willed her to be strong. ‘See you soon, little one,’ I cried as I handed her over to the nurse. I couldn’t believe I was saying goodbye to my baby just minutes after giving birth.
After an agonising wait, we were both transferred to Monash Children’s Hospital.
‘Michaela has cutis aplasia,’ said a doctor.
Neither Keith or I had ever heard of the condition but we soon discovered that not only did Michaela have skin missing from the top of her head but the bones, which would normally meet near the centre of her skull, were sitting much lower than normal.
It meant she had a 10cm by 4cm hole on top of her head – leaving her brain exposed. It was the most severe case any of the doctors had seen. She faced a severe risk of infection and an accidental knock to her brain could be fatal.
My poor baby! Only a few hours old, Michaela faced the battle of her life.
The gauze was protecting her head for now but she needed a more permanent solution, so was booked into surgery for a skin graft the next day. Doctors planned to take skin from her back and delicately place it over her head to close up the hole.
My parents Kim and Ted, both 55, arrived to offer support. That’s when I heard more about what Keith had seen when Michaela was first put in my arms. ‘You could see her brain,’ he confessed.
It was hard to comprehend what this meant for our little girl. Was she going to be okay?
The next morning Keith and I said our goodbyes before our bub was taken for surgery.
She was too fragile to hold, all we could do was clasp her tiny hands. ‘The doctors will take care of you. Mummy and Daddy love you,’ I whispered.
Thankfully, the op went well and a few hours later Michaela was in recovery.
Although the skin graft protected her from infection, her brain was still dangerously exposed to accidental knocks.
So Michaela had to lay on her stomach and have a breathing tube.
This is when we first saw our girl’s fighting spirit. She was constantly trying to roll on to her back and was never happier than when her cot was surrounded by people.
Michaela had the most infectious grin and the brightest eyes!
Over the next two months she needed two more skin grafts. After that, doctors decided to fit her with a little blue helmet to protect her head. It helps to keep infections out and makes sure everything stays exactly where it should be.
She also has to wear a beanie 24 hours a day to stop her scratching her head.
After three long months in hospital, our baby girl was finally able to come home.
To celebrate, we invited our family and friends over for a special helmet party. Everyone wore helmets decorated with beads, flowers and balloons.
In time, the bones in Michaela’s skull should grow and meet naturally. The hole has already shrunk to 5cm by 4cm and we hope it will close fully by the time she turns one. Then doctors will be able to expand her skin and leave her with a normal hairline.
Although it will be a long road for Michaela, we still see ourselves as very lucky. It could have been so much worse. I had a two-hour, easy labour where they didn’t need to use forceps or suction, I dread to think what would have happened if they had.
We were also blessed to have incredibly talented doctors and nurses take care of our baby. Now her future is bright and happy and for that we’re so thankful.
Originally published in that’s life! Issue 21 – May 26, 2016
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