The first hint of her daughter’s condition came during a routine scan at the early stages of Jennifer’s pregnancy.
“When something showed up, which was a cyst on the brain, the nurse’s face wasn’t right,” Jennifer recalls, “and then the scan of the heart didn’t look too good either.”
The worrying wait for an expert obstetrician followed, during which Jennifer, in the company of her husband, John, worked mentally through their avenues of response to a potential worst-case scenario.
“Nobody thinks it’s going to happen to them,” Jennifer says. “This was my sixth baby. It was a surreal moment. This isn’t really happening. My first thought was Down Syndrome and because there was a hole in the heart my thoughts were how we would fix this and bring our baby home.”
Things were set to become even more surreal for the expectant parents, however.
Having considered the scan results, showing both a diminished cerebellum in the brian and tricuspid atresia (the absence of the heart’s tricuspid valve) the obstetrician informed Jennifer and John: “Well most people would go to England.”
“It was not as blunt as ‘you should have an abortion’,” Jennifer recalls, “but abortion was so far from our train of thought.”
In the midst of the shock, Jennifer says, it was John who rationalised things best at that moment.
“He was shocked but his acceptance of events was immediate. He had worked in the heart unit in Crumlin. He has seen sick children. His attitude was that this child was conceived this way so we will do whatever it takes to help her reach her potential and love her. He was so calm.”
Such a demeanour now became important for the path that lay ahead. Resolved to ignore advice abhorrent to them both, Jennifer and John now faced those tests made necessary by the earlier scan. But here, for the first time, their decision was met with a heartening response.
“There was a chromosomal test to look for major conditions and after that we got an appointment with a cardiologist,” Jennifer explains. “The judgment from the cardiologist was ‘I give this baby a very good prognosis’. When we spoke of our hope that this was a good sign for the future, the cardiologist added: ‘If you don’t have hope you have nothing.’”
Even so, miscarriage – suffered by Jennifer previously – was still a possibility which haunted her through the pregnancy’s early days. She describes the time in which “I prepared to face my grief”. And at the same time, “I wanted to get the baby to 24 weeks so she would at least have a birth certificate”. As time passed, such thoughts gave way to the hope that Louise would indeed survive.
A new foetal scan of the brain confirmed that the unborn Louise had Dandy-Walker syndrome, setting Jennifer immediately on a research trawl of documents and online sources for more information.
“My reading of the condition in texts promised the probability of major disability and pointed to high mortality rates. It was awful.”
But then Jennifer came across a Youtube clip on Dandy-Walker, showing children who have the condition.
“They were such beautiful children,” Jennifer says, “not at all what I had been reading about in medical papers.”
Added to this, the cardiologist gave great options in relation to Dandy-Walker, including heart transplant.
Unfortunately, the obstetrician once again proved less than positive, reminding the parents that young hearts were not so readily available.
“That really took the wind out of our sails again,” Jennifer says, remembering too that even though she and John had already chosen to name their child Louise, the obstetrician would not use the name, or even refer to the ‘foetus’ as a ‘baby’. It still clearly hurts Jennifer.
Conversely, however, Jennifer is effusive in her praise for the staff at Crumlin Children’s hospital in Dublin.
“The first thing staff at Crumlin asked was the baby’s name and referred to her as Louise from then on,” she says pointedly.
When the time came, Jennifer goes on, the birth of Louise was “such a peaceful event, and so lovely”. Happier yet, there were no early indications of any problems, and Louise, being a good feeder from the outset, was cleared for home after just five days.
A necessary heart operation followed within weeks, but, according to Jennifer “aside from that, Louise needed no help, and is what is commonly described as a ‘quick’ child in all things. Jennifer points out too that she is good natured, “but you won’t get the better of her”.
Looking back now, to a point where Louise was, in some quarters, a candidate for a termination, Jennifer reveals that one of the strongest feelings she personally experienced was of “being judged”.
“We both felt judged and things that were said about the lack of hope for Louise’s safe birth barely hid a contempt.”
Now, with Louise flourishing and because of her condition, “I have friends all over the world, linked by Dandy-Walker.”
It is a joyful outcome tempered by one factor, however.
“I have not met one who was not advised to terminate,” she says sadly. “Some were even called irresponsible for going ahead with their pregnancies.”
The results of such ‘irresponsibility’ continue to smile from the Dandy-Walker Alliance website today, giving added power to Jennifer’s personal opposition to Ireland now legislating for abortion.
“When something becomes legal,” she warns, “it becomes an expectation and then becomes a duty. That is the danger in making abortion legal.”
What is Dandy-Walker?
Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present. The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum (the connecting area between the two cerebral hemispheres, and malformations of the heart, face, limbs, fingers and toes.
Testimonies of Dandy-Walker
“We went from being devastated by the in utero Dandy-Walker diagnosis to being filled with hope and optimism for our son and our future as a family. Ryan is such a blessing in so many ways.” – Eric and Andrea.
“At 16 weeks gestation, we were given the option to terminate our little Abby due to Dandy-Walker syndrome. This little girl has every chance to live a happy, fulfilling life. More education is greatly needed for parents and physicians, so every Dandy-Walker kiddo has a chance. Please learn and share to help more children, like Abby, light the lives of so many as she does today!” – Rick, Leigh and Grace.
Samuel entered the world with his ventricles dilated almost eight times the norm. He had seven shunt revisions and five other surgeries before he was 3 ½ years old. At eight years old, he is a bright, articulate little boy who will enter third grade this fall. – Brian and Lisa.
“During our 28th week of pregnancy, an ultrasound showed areas of fluid on our baby’s brain. We were told that she had Hydrocephalus caused by Dandy-Walker. We were given a description of her symptoms and wide and frightening range of possible outcomes. After 10 weeks of agonizing wondering, our beautiful baby girl was born. She has a shunt and some physical delays that she is overcoming. She is the greatest thing that ever happened to us!” -Joel and Caryn.
“At 23 weeks we were told by our perinatologist that our baby would be the slow Uncle or Aunt and we should strongly consider terminating. We didn’t. Today we have a beautiful, healthy little boy named Mathew. While we don’t know what challenges the future holds our lives have been blessed by a precious gift.” -Ryan and Shayna.
After finding out that our unborn child had Dandy Walker we were heartbroken! We decided that God was in control and no Doctor was going to decide the fate of our child. Two and a half years later he is happy, healthy, and thriving!! He is a miracle and truly a gift from God. -Tommy and Holli
Five years ago Tess was born with both Dandy-Walker and Hydrocephalus. It was scary for our family and we had no idea what to expect. Today she is a happy, healthy, five year old getting ready to start kindergarten! She’s overcome some challenges and amazes us every day with all she accomplishes. There is no doubt she can do anything she sets her mind to! Don’t let anyone tell you what your child can’t or won’t do, many children with Dandy Walker defy their prognosis every day! –Terri
“We didn’t know about Carter’s DW until he was 7.5 months old…Our happy baby with captivating blue eyes has grown into a sweet and tenacious boy who amazes us with his zest for life and determination on a daily basis. We don’t know what the future holds for him, but we end each day knowing that Carter is happy and thriving and the best Carter that he can be. There’s not much more we can ask for than that! -Doug and Lisa
“Samuel entered the world with his ventricles dilated almost eight times the norm. He had seven shunt revisions and five other surgeries before he was 3 ½ years old. At eight years old, he is a bright, articulate little boy who will enter third grade this fall.” – Brian and Lisa
“During our 28th week of pregnancy, an ultrasound showed areas of fluid on our baby’s brain. We were told that she had Hydrocephalus caused by Dandy-Walker. We were given a description of her symptoms and wide and frightening range of possible outcomes. After 10 weeks of agonizing wondering, our beautiful baby girl was born. She has a shunt and some physical delays that she is overcoming. She is the greatest thing that ever happened to us!” -Joel and Caryn