Holding on to big dreams

“We need to discuss your ultrasound. There appears to be severe anomalies with the baby’s brain and spine …”

These are chilling words that every person dreads. Lise Baldwin heard them from her obstetrician, on a routine appointment when she was with her two year old daughter, who wanted to hear the baby’s heartbeat.

Lise’s son Jaden has Spina Bifida. He is 10. Not surprisingly, Lise has learned a lot about life through having a son with a disability, and she writes powerfully about how much she has grown. Here are some edited extracts from her writings.

  1. Expecting the Unexpected – Prenatal Diagnosis.

“We need to discuss your ultrasound. There appears to be severe anomalies with the baby’s brain and spine … It could be Spina Bifida. We can book you in for an amniocentesis and if there’s chromosomal issues we can organise a termination of your pregnancy.”

It’s hard to forget the moment I went to see my Obstetrician for an appointment accompanied by my two year old daughter who was eager to hear the baby’s heartbeat. What was supposed to be a routine check up was anything but. I had had the 18 week ultrasound the previous week, but received no warning ahead of the appointment that there was anything wrong. Instead of my husband being by my side, my daughter comforted me as the Obstetrician spoke in a matter-of-fact way regarding ending the pregnancy because something had gone “horribly wrong”.

The week before I was carrying a baby, but today I was carrying a foetus with anomalies. Well, in the eyes of these medical professionals I was.

Prenatal testing has been available since the 1970s. It is now recommended to all mothers. They serve as a great tool to prepare families and the medical team to address diagnosed disabilities prior to birth. They also serve to give families the opportunity to end the pregnancy, and get rid of the affected foetus. The decision a family makes is more often than not influenced by how the doctor presents the news. The doctor often has no hands on experience caring for a child with disabilities, and no real training in delivering pre-natal diagnoses to a family.

What tends to be communicated is exaggerated predictions of pain, suffering and dependence that the child will face if the pregnancy continues. This purely deficit focus ignores the fact that there is more to the baby than their diagnosis. It raises the issue of whether the Obstetrician is really the best person to deliver the news of diagnoses, as well as the urgent need for objective, honest and unbiased discussion.

With very high termination rates amongst babies with all kind of anomalies (in particular spina bifida and down syndrome), life with a disability continues to be viewed as a life of suffering, an inconvenience, a burden, but all avoidable if the baby is not born.

The assumption is that it is better not to be born than have a disability.

If a foetus is not worth carrying to term, then what does this tell us about the worthiness and the value of the life of a person with a disability who is living?

I did not automatically love my baby any less because of a diagnosis. His disability was definitely not planned for, however I have learnt over the years that life is rarely as we plan it to be. We try our best but, sometimes we need to make adjustments, even if the obstacles seem insurmountable at first.

Nobody can predict the future. A prenatal test doesn’t tell you the kind of person your baby will be, what skills they will develop, what friends they will make, how they will contribute to their community, or even for sure how they will develop physically.

Just because my son was diagnosed with Spina Bifida, it did not mean his life ceased to have meaning anymore. He wasn’t a tragedy. He was our baby and we were going to give him the best possible life we could and over 10 years he has proven the doctors wrong countless times.

Our journey has not been without challenges, but it’s been worth it, and I wouldn’t have my son any other way.

  1. A Change of Plans

I kiss my son on the forehead, tell him that he is the strongest little boy I know and that everything is going to be okay as the doctors administer the anaesthetic that will send him off into a deep sleep for the next few hours.

Today he undergoes his 19th major surgery. He’s only nine years old.

It’s not easy, but it’s our reality. It’s not what we chose, but it’s what we have chosen to accept.

When we find out we are having a child, one we planned for, there is an overwhelming sense of joy. Dreams, hopes, expectations flow through our minds. We envision the ‘perfect’ child.

Not in our wildest dreams do we ever expect that our child will be born with or develop disabilities. All of a sudden there is an interruption to the harmony in our world. Our concept of justice is shaken, the question ‘why me’ permeates our minds, and all these hopes, dreams and plans we had for our child come into question.

Victor Frankl, an Austrian psychiatrist and Holocaust survivor, once said, ‘When we are no longer able to change a situation, we are challenged to change ourselves”.

My son has a disability and that wasn’t going to change. It was a reality we had to face, but it didn’t mean our dreams needed to die. We could still dream big, have hopes and expectations, they just took on a slightly different appearance than we had first imagined.

Incredible personal growth can occur when our life plans are interrupted and it can significantly alter the way we see the world and ourselves. We learn to face and conquer things we never thought imaginable.

The strength we never thought we had finds its way into our core. Over time I have had to learn to throw out all the questions I first asked – the ‘what ifs’ and the ‘what wills’ – and not obsess about the future.

Taking one day at a time, accepting and enjoying my son for who he is, having confidence in his abilities, focusing on what he can do, not what he can’t do, and living as normal a life as possible became so important.

As my son awakes from surgery, I look at his beautiful face and realise I didn’t ‘lose’ a ‘perfect’ child. Instead I gained everything – an incredible human being who is so much more than the child I dreamed about.

  1. My child has a disability not a disease.

‘Spina Bifida Sufferer’; ‘Jaden is permanently wheelchair bound’; ‘Jaden helps others despite suffering from Spina Bifida’; ‘Jaden’s crippling condition…’

My son Jaden has featured in the media ever since he was a baby. While for the most part the stories have been positive, highlighting the full life he leads, the reporters will still slip phrases such as those listed above, into their reporting.

This is all because he was born with a condition that affects just a part of his life. The media love to sensationalise their reporting, portraying people with disabilities as either helpless victims suffering from their own impairments who we should pity; or heroic individuals who somehow ‘overcome’ their ‘affliction’ and whom we should be inspired by.

Spina Bifida is an impairment of the spinal cord which results in some form of paralysis and other associated conditions. It is not an illness, it is not a disease, and if you ask many people with this condition, they will attest that they certainly don’t suffer from it.

Yet outsiders, especially the media, seem entirely confident to make assumptions that just because a person has a disability such as Spina Bifida, their lives equate to suffering – a tragedy, and a life of pain and dependency. And when they are seen to be living a positive life, they are given a hero-type status.

As a parent I want people to see Jaden like we see him, a kid who engages in life, who helps others, who achieves his dreams, who contributes to his community, and not ‘despite’ having Spina Bifida, but because this is just who he is. I really hope that one day the media and society as a whole can acknowledge that disability does not equate with illness, dependency and personal tragedy, but that it is just a normal part of some people’s lives.

* Readers can contact Lise Baldwin at lise@ibl.bm