What would you do if you found out you were pregnant but your baby had a serious and incurable condition that could have a great impact on its life and your family?
Your choices are to go ahead with the pregnancy and live with whatever health difficulties your child might face or terminate the pregnancy.
Tonight’s Australian Story: The Hardest Choice follows the journey of Claudine and Dave Fitzgibbon, who were faced with this decision three times during their quest to have the family they’d always hoped for.
Growing our family
After welcoming a healthy girl in 2013, the couple were excited to give their daughter Eliza a sibling.
In the three years that followed, Claudine fell pregnant three times and each time their unborn baby was found to have spina bifida, a congenital defect of the spine that can lead to serious problems with mobility and brain function.
“To choose not to have a baby, a wanted child, in your family because there’s something wrong with her; I mean it’s awful,” Claudine told Australian Story.
Claudine says when she fell pregnant with the couple’s second child, Sophie, she had no reason to think it would be any different than her first.
“Because Eliza was a very straight forward pregnancy, my second pregnancy, I was planning to take the same route,” she says.
“I made an appointment with my GP, 12 week scan came and went fine, 20 week scan came and was not fine.”
The worst news
The couple’s obstetrician Dr Antonia Shand confirmed Sophie’s diagnosis of spina bifida, a condition the couple knew very little about at the time.
“This is a condition affecting baby’s spine. Often the nerves are exposed to the amniotic fluid in utero, the nerves get damaged and this can often lead to problems with walking, bladder and bowel function, and also sometimes children get hydrocephalus, which is fluid around the brain,” Dr Shand explains.
Many couples feel a great time pressure to decide whether or not to terminate the pregnancy.
“When you stop a pregnancy before 20 weeks there is no requirement to register a birth or death, says Dr Shand.
“For these reasons many women feel under pressure to make a decision as soon as possible under 20 weeks”.
The Fitzgibbons made the heartbreaking decision to discontinue the pregnancy.
But this wouldn’t be the only time they would be faced with this choice.
The choice no parent wants to make
Despite the low odds of going on to receive the same diagnosis in future pregnancies, that’s exactly what happened. Not just once but two more times, with another girl named Willow and a boy, Harvey.
Both Claudine and Dave felt a responsibility to their unborn babies to not bring life-long suffering into the world and decided to terminate their pregnancy with Willow too.
“It’s a very big decision to only have a week and I just couldn’t get my head around bringing a child into the world knowing that there would be a lot of medical intervention and not knowing if that child would ever really be independent,” she says.
But after receiving their third diagnosis with Harvey, their desperation to find a solution was profound.
A risky operation to offer a different option
Seeking another option from their doctor, the Fitzgibbons were told of a complex surgical procedure that had just been performed in Australia for the first time at Brisbane’s Mater Hospital by Dr Glenn Gardener and a huge team of surgeons.
It involved operating on the baby in the mother’s womb and while not a cure, it had been found in the US to improve the quality of life for babies with spina bifida.
After hours of delicate surgery, ten more weeks in utero, Harvey was born at 32 weeks.
His precise condition won’t be known for a few more years to come but the early signs are good.
Questioning their choices
Claudine told Australian Story she still thinks of Sophie and Willow.
“I couldn’t help feeling, when I touched Harvey’s hand, that could have been one of our girls and I wondered, how on earth did I make that decision to not have them here with us?” she asks.
“But I can’t torture myself with that and I feel very strongly that the girls are on this journey with us, very much, because without them we wouldn’t have Harvey and I just look at him and I think that he is a miracle.”
I don’t judge, because I have been there too
Claudine and Dave’s story reminds us to never judge another parent until you have walked a mile in their shoes.
When I was 18 weeks pregnant with my son, a scan failed to find his nasal bone. My husband and I had conceived him after four years of trying, risky surgery and IVF. To say he was wanted would be an understatement.
Before that day sitting in the obstetricians office, we had always believed we would go ahead with the pregnancy no matter what. But when faced with the reality of life with a child who may have Down syndrome, it suddenly didn’t seem so black and white.
It was confronting, I felt an immense weight of responsibility on my shoulders. Financially drained and in debt over our conception journey, I wondered what life we could give our child if it had special needs.
I have met many beautiful people with Down syndrome so I know the possibilities are endless for them in life but I was also aware of the many challenges they and their families face and I wanted to at least be prepared.
I needed to be certain
Despite the risk of miscarriage, I wanted to find out with more certainty by having an amniocentesis – a procedure where a needle is inserted into the abdomen to obtain a small amount of amniotic fluid for testing.
Everything came back clear and I went on to have a happy and healthy little boy but many have judged me for even taking that risk.
You just never know which way you will go until you are faced with having to make the choice yourself.
To this day I still don’t know what choice I would have made – only the choice I hope I would have made.
To understand the decisions Claudine and Dave made in each instance, you need to see tonight’s episode of Australian Story. There is a lesson there for every parent and anyone who dreams of having children one day. The Hardest Choice premieres Monday, February 13 at 8pm on ABC.