A mother
has told of her heartbreak and joy after making the agonizing decision
to proceed with her pregnancy - despite being told her daughter was
'incompatible with life'.
Abbey
Ahern, 34, who lives in Cashion, Oklahoma, was devastated when she was
told at her 19-week scan that her daughter had the terminal illness
anencephaly which meant she would not live beyond a few hours.
The stay-at-home mother said that carrying her daughter to term was the 'most difficult thing I have ever done'.
Devastating: They were told at Abbey's 19-week scan that Annie, pictured, had the terminal illness anencephaly
The family spent just 14 hours and 58 minutes with Annie before she passed away.
According
to the National Institutes of Health, the defect - which means the baby
has an underdeveloped brain and incomplete skull - affects around one
in 1,000 pregnancies, most of which result in miscarriage.
As a result, approximately one in 10,000 babies in the US are born with an encephalitic.
Abbey
and her pilot husband Robert, also 34, decided to have a live birth so
that they could spend time with their daughter and donate her organs -
making Annie the first infant newborn donor in the state.
Abbey told Daily Mail Online: 'Carrying a terminally-ill baby to term was by far the most difficult thing I have ever done...
'For us, even in the midst of our terrible heartbreak we were able to see so much beauty.
'The process of donating Annie's organs has been incredibly healing to me, knowing that my baby has saved lives.'
At times she said she felt overwhelmed by the situation but she drew comfort from the support of her husband.
She
added: 'The entire thing felt impossible. If it wasn't for my husband
and our strong support system I believe Annie's story would have been
completely different. Probably much darker.'
Although nobody tried to put them off their decision, Abbey said she was met with some skepticism from family and friends.
Purpose: They decided to go ahead with the pregnancy so they could enjoy
their daughter's 14 hours and 58 minutes of life and donate her organs
Storytime: Dylan requested that they bring a copy of the Christian book
Heaven Is For Real to the birth so they could read it to Annie
'From the first moment, we hoped for a live birth and planned a C-section. We wanted a few precious memories with our girl.
'No-one
tried to change our minds, but whenever I told certain family members
and friends, they asked, "Are you sure this is what you want to do?"...
'Even my own sisters both told me later that they thought we were crazy for wanting to carry to term,' she told GoodHousekeeping.com.
Abbey
- who had two older daughters, Dylan and Harper, now seven and five,
when Annie was born, and has since given birth to Iva, two - said news
of her third daughter's diagnosis 'sucked the air right out of my
lungs'.
She added: 'I knew what he [the doctor] was saying but I couldn't really apply it to us or to our baby.'
Afterwards they asked the doctor for the gender of their unborn child and decided to name her on the spot.
'Naming our two older girls had been a struggle. But right then, we named her easily: Annie, which means, "grace."
'We knew she had a purpose — even though she was not made for this world,'
Abbey said.
During
her pregnancy with Harper, she had suffered from pre-eclampsia which
resulted in her daughter being born at 33 weeks and spending a month in
NICU.
Ahead
of Annie's birth they had numerous hospital meetings to plan everything
required to ensure that they were able to donate her organs to
transplant donor service LifeShare.
Terminal: The defect, which means the baby has an underdeveloped brain
and incomplete skull, affects around one in 1,000 pregnancies, most of
which end in miscarriage
Prepared: Abbey said that before the birth on June 26, 2013 she had 'such a sense of peace'
Abbey said being asked innocent questions about her pregnancy was agony but she usually tried to answer as if nothing was wrong.
She said they did not know how long their daughter would survive, but they knew it would be short.
'One
of my big fears was that I'd be at the hospital and her time would be
slipping away, and I wouldn't have what I needed for special moments,
like the hat and booties I knitted for her pictures or a gift for her
sisters,' she said.
Their marriage counselor gave them a white dress for Annie to wear which they packed for the hospital with a hat and booties.
Dylan
requested that they bring a copy of the Christian book Heaven Is For
Real, as told by Colton Burpo to his parents Todd and Sonja, so they
could read it to Annie after she was born.
Abbey said that before the birth on June 26, 2013 she had 'such a sense of peace'.
She first became aware of Annie's arrival when she heard 'a commotion' and saw the photographer taking pictures.
'She had the mask on and her eyes were full of tears, but she was smiling. I knew Annie was here.
'She didn't cry much, but I heard her making noise. They showed her to me, and she was so beautiful,' she said.
Joy: When medical staff put Annie in her arms Abbey said she felt 'lighter than I'd felt in five months'
Short-lived: At around 11pm she heard Annie 'gasp' and knew that she was reaching the end of her life
New arrival: She first became aware of Annie's arrival when she heard 'a commotion' and saw the photographer taking pictures
When medical staff put Annie in her arms Abbey said she felt 'lighter than I'd felt in five months'.
She added: 'I remember holding her hands and pressing my face on hers and smelling her. I couldn't kiss her enough.'
Despite the poignancy of the moment, Abbey said everybody was happy.
They read her the book as requested by Dylan which Abbey said was 'one of the best moments of my life'.
At around 11pm she heard Annie 'gasp' and knew that she was reaching the end of her life.
She said: 'Annie got to be with us all day, and she was ready...If she had to die, I'm so glad it was in my arms.
'She
lived a beautiful and incredible 14 hours and 58 minutes. She spent her
entire life surrounded by love, joy, and peace. There was no sorrow,
even when she passed away.'
Her organs
were not viable for transplant because her oxygen levels were too low -
which Abbey said was 'disappointing' - but they were able to donate her
heart valves and some of her organs could be used for research.
Six months after Annie's death, they were told they could start trying for a baby and Abbey soon became pregnant with Iva.
She said: 'Annie's story is one of hope. I think it shows people that in the midst of tragedy, there can be beauty.
'Annie was not ours to keep — her story was meant to be shared, and I intend to do so until the day I die.'