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They gave us no hope

Written by Christine Allen

Thursday, 07 April 2011

The family of a baby girl from Hollyhill says she is their “miracle”, after her diagnosis with a rare condition meant doctors told them she could not live. The grandparents of baby Megan Hope Byrne, Patricia and Timothy O’Mahoney from Cathedral Road, told the Cork Independent this week that their prayers have been answered by the little girl’s survival.

Their daughter, Janice was 14 weeks into her pregnancy when she was told about complications with the baby’s head. Megan was born with a cleft palate and diagnosed with Hydrocephalus. She is one of just seventeen children worldwide with the condition of Holoprosencephaly (HPE), which prevents the foetal brain from growing forward and dividing, as it is supposed to during early pregnancy.

According to grandmother Patricia, a pregnant Janice was told she could lose the baby. “Each scan she got was worse news. They gave us no hope.” However, the baby had a strong heart and despite an emergency Caesarean section seven weeks before she was due, has survived the worst. Baby Megan Hope Byrne was delivered, six weeks premature, on Thursday, 11 February. She was christened once all of her grandparents had arrived.

“She was grey in the face. She was definitely dying. We expected the worst and had even been talking about where we were burying her. It was awful. There was no coming back. We were in bits in the corridor,” said Patricia. “We couldn’t believe what happened next. She started to suck on the doctor’s finger so she was rushed upstairs and put in the baby unit. It was a case of waiting every hour then.” Janice had already explained the cleft palate to Megan’s big sister Sophie (4), but when she saw her, Sophie thought her baby sister was perfect.

Megan was sent home a week later for palliative care, as doctors were sure she could not survive her overwhelming condition.

Recovery

Little Megan had a shunt inserted in her skull in September 2010 to help clear the fluid from her head, due to a build up of pressure. “She looked so bad, worse than what she actually was. When the fluid was in her head she couldn’t move and was vomiting. Once the fluid was drained, she’d be fine,” said an emotional Patricia. Doctors at Temple Street Hospital were unsure if anything could be done, until they saw how much she was able to do despite her condition. Megan was booked in for an appointment the next day. “She was fantastic after that. Her mobility improved and she started getting way brighter,” explained Patricia.

However, it was not plain sailing from there. The family spent Christmas at the Tír na nÓg ward at CUH as Megan fell ill after complications with her shunt were discovered. Megan’s shunt was replaced and her recovery has been steady since then.

Grateful

Megan Hope Byrne is now 13 months old and had her cleft palette operation just three weeks ago, where she also had bone taken from her toe for her thumb, as she was born missing two fingers and four of her toes. She was given a new thumb, cheekbones and new eyelids and her nose was reconstructed. “We thought we would be waiting for months. But the doctor only saw her first five weeks ago.” “She’s a miracle. Every time we thought she was gone, she came right back.

“The doctors and nurses and the Cope Foundation are baffled by her. She was spoon feeding at three months, even though she had no palate.” Megan counts among her friends and playmates those other little fighters, the Benhaffaf twins, who attended her first birthday in February.The family are hoping to host a benefit night to help with the expenses involved in Megan’s treatment, as she is set to have more medical procedures. “For a child that we were looking for a grave for, now she’s calling us. The future looks great. “I’m not holy, but I said so many prayers. She’s our little miracle and we’re so grateful for all the support from family, friends and neighbours.

“Looking at Megan, our prayers have been answered,” her grandmother said.

Comments (2) »

Hope
written by Phephelaphi Tshabangu, May 01, 2012

You touched my heart, you are such a brave little girl am so glad you allowed me to hold you in my arms for a little while, Sophie you are a great sister to Magane Hope.i don't even know what to say to your mum a young woman going through this, keep the hope alive sister you are strong never give up on her, she us a miracle indeed. Thanks to all your family who helps in taking care of her especial her auntie who i met. God bless you all remember nothing is imposible.

donations for Megan
written by Therese Mc Sharry, May 01, 2011

I recently saw an article about Megan on TV3 news and wanted to donate some money towards her recovery, however we were told to get further details on tv3.ie on how to do so but no information was given. Would you please mind sending me on any information on how to do so via e-mail. Sorry I dont read your paper as I am from Leitrim and only heard of her storey through the t.v.
Thank you
Therese

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