Every life is worth living – A challenging and inspiring story

Saying Yes To Sara – a testimony by Catherine MacMillan

I found out I was pregnant in the summer of 2009 when I was 18 years old. I had recently returned from a gap year in Africa and had a place at Glasgow University to study music. The course was due to start that September.

Of course I did not feel ready to be a mother: I felt I was too young, I worried that I might not be able to cope with being a young mum. I had so many plans and I didn’t have a great relationship with the father. I booked an abortion, and this fact has filled me with such guilt that I’ve only started openly admitting it this year.

It is becoming more and more rare for young people to hear the case against abortion and it can be disheartening when the only advice available from people around you is to take take the opposite action. It is a counsel of despair. Pressure on young women in these situations is now huge. Abortion can seem the only way out of a frightening new situation.

Miraculously, my wonderful family found out about my pregnancy. Only then did I realise that they were going to be supportive of this new chapter in my life, and that abortion was no longer something that needed to be considered. When I speak about the person I was then, it doesn’t seem as if I’m talking about myself.

Although I was naive, self-centred, self-destructive and stupid in so many ways, I am proud of, and so very grateful to that old version of me for eventually saying yes to new life. As it turned out that wonderful new life was on its way to teach a lot of lessons, and ultimately to save me. In my 26th week of pregnancy I decided I would like to know the sex of my unborn child, so my mother and I went along to a private gender scan.

At this scan it was revealed to us that I was carrying a little girl, but also that this little girl had quite a few brain abnormalities. We were passed over to the hospital for further assessment. I used to think of that week as my “mourning period”— mourning the loss of the child I thought I would have. I tried to forget some of the hopes and plans I had already made for her, like teaching her how to play the cello and how to sing, and I mentally cancelled all the nice nurseries and schools I had made a list of in my head.

I’m now glad that week was so tough, as it matured me emotionally by about 10 years. Something else happened that week. It might have been happening before then, but that point in my pregnancy signified when I became my daughter’s advocate and began to stand up for her life, her right to life, and all that comes with that.

I’ll never forget the doctor I met the following week. She was the first of many with appalling social and people skills. She was a very severe woman and she didn’t give a hint of empathy for my situation the whole time I dealt with her. She scanned my (at this point enormous) belly in total silence, and when she had finished she took a deep breath and recited this speech: “There is a chance your child will be ‘normal’ and perfectly healthy, but there is also a chance she may not make it through birth. She will potentially be extremely disabled, she could have anything from Down’s syndrome . . . ” She then went on to list lots of possible scary syndromes, with a few of them usually resulting in the child’s death during or straight after birth.

The doctor strongly advised termination and offered no support whatsoever for my decision to continue with my pregnancy. I now know that this is scarily common in our hospitals. It is legal in this country to have a disabled child aborted up to 40 weeks into pregnancy. NHS guidelines consider a baby full-term at 37 weeks, though most women go into labour between 38 and 42 weeks into their pregnancy. Ninety-two per cent of prenatal Down’s syndrome diagnoses are terminated. This means that  if modern medical procedures continue in the way they have been going for the past decade, it will not be long before the condition is virtually extinct.

When I went in for my 30-week scan with the same doctor she was still pushing termination on me. I was a huge, waddling pregnant woman. Such a procedure routinely involves giving the baby an injection, usually of potassium, into its heart so it dies before the process starts. Then the mother would have to give birth to the dead child, or a suction device would be used to remove the dead child from the womb. No one ever tells you that. No one ever explained what I would really have had to do if I had agreed to “terminate”. I would have still had to give birth to my child, and it would have been my fault that she wasn’t breathing.

Doctors don’t tell you how traumatic that choice would be, how much of a burden that would be to carry around with you for the rest of your life. The same doctor continued to strongly advise termination until I was 35 weeks pregnant. On March 31, 2010, my beautiful Sara Maria was born. She was crying, loudly, she weighed 6lb 7oz, she was alive and she was perfect. It took a few months before the extent of her problems became clear. Even the doctors were encouraging in their prognosis after her birth, but only for a short while.

As soon as she was born, things became so much easier in a way. She was a gorgeous baby. Sara spent the first two years of her life very unwell with constant chest infections because of an undetected unsafe swallow. This meant that she had been aspirating on her feeds. When it was eventually detected, she had a gastronomy feeding tube surgically fitted in her stomach. Unfortunately, the way we were treated by the doctor who initially told us Sara could be disabled was the start of a recurring theme. Sara needed a lot of medical intervention; she had five major operations, 20-odd specialist doctors and she needed round-the-clock care.

I had to file complaints against doctors for neglect and bad practice. I had constant rows with some of her doctors about whether they had her best interests at heart. Some of them did not view Sara as a human being; they viewed her merely as a medical problem that they could not solve. Instead of trying to make her life the best it could be, some of them acted as if they could not be bothered, because unlike other children’s conditions, such as cancer, they couldn’t be the hero and cure Sara’s.

Sara’s condition is called Dandy Walker Syndrome, which means that three parts of her brain did not form correctly in the womb. Her other conditions included epilepsy, cortical vision impairment, scoliosis and hip problems, and she was fed entirely through the gastrostomy tube in her stomach. She was non- verbal and immobile. She also wore hearing aids for a long time, but at the end of last year we discovered, after much debate and disbelief on my part, that we were right about her not having hearing impairment. Despite my fears of her never being musical, Sara was a pianist and a drummer, with an eclectic taste in music already, ranging from Rachmaninov piano concertos to lots of different folk and rock music.

Sara’s favourite singer, Jackie Oates, came and sang specially for her at her fifth birthday party last year, thanks to the generosity of the Make A Wish Foundation. Despite not being able to talk, she learned to quack like a duck. One of her favourite things to do was to visit the ducks at the pond and have little conversations with them. Sara had her feeding tube fitted when she was two years old. It dramatically changed her quality of life, although she still struggled with reflux and digestion issues. I eventually found out that this was because of the milk being prescribed by her gastro-surgeon and dietician.

After some research I decided to put her on a blended diet of real food. Anything you and I would eat, she got it too. This had a huge impact on her health and happiness and for the last three years her main medical problem was hip dysplasia, which she had surgery to correct last year. The high-protein diet appeared to cure her epilepsy, and she stopped having seizures altogether, which was wonderful. She was a late smiler but she certainly made up for that. I have been told by countless people that Sara is the happiest child they have ever met.

Being so inspired by my daughter’s bravery and everything else, I completed a Bachelor of Music university degree, on time, with honours and a 2:1. Sara inspired me to do work with disabled adults and children doing music therapy, and I now teach early-years music classes. I will be going back to university in August for my one-year postgraduate teaching diploma.  I want to become a primary school teacher. When Sara’s health improved I started to take her on a lot more adventures. Such a well-travelled girl, such a happy girl, such a fulfilled life. Lots of days at the beach, visiting historical castles, a life filled with going to classical music concerts and plenty of parties and social gatherings, which she thrived in.

I took her to Disneyland Paris just before last Christmas, and it was just as magical as we could have ever hoped for. On the morning of January 5 this year I was busily preparing Sara’s uniform for her return to school the next morning, and sorting through my piles of work for my return to work after the Christmas holidays. Sara hadn’t made any noise yet, but it was not unusual for her to have a long lie-in, so I let her sleep for a little longer while I got organised.

Little did I know that in the early hours of that morning, my happy, beautiful, miraculous little girl’s soul had returned to Heaven. She passed away peacefully in her sleep and with no warning at all. She would have been six years old at the end of March. We still don’t know the cause of death, but it is likely that Sara died from Sudden Infant Death Syndrome. I wasn’t prepared for that. But I take comfort from knowing that she didn’t die from any of the scary things I had been prepared for, like the pneumonia she came close to suffering from when she was two years old, or a long stint in hospital with her health deteriorating over time, and me having to watch her suffer.

At her Requiem Mass my father, the composer Sir James MacMillan, said this: “Catherine’s life changed forever when she said yes to new life, and we saw in this relationship an astonishing love and devotion; we saw rapture gazing at rapture, tenderness embrace tenderness, devotion build upon devotion, worship meet worship, the cherisher lift up the cherished, the enchanter astonish the enchanted, and heart lost to heart.”

He continued: “Our world celebrates strength and power. We glorify might and wealth and health and success. We cheer winners and achievers, we bow before men and women of financial clout, we laud politicians of guile and ruthlessness. Sara had nothing of any of this. Our society doesn’t know what to make of children like Sara any more. There are some very important, powerful, professional, ‘caring’ people in Glasgow who made it clear that they thought Sara should not exist—that the compassionate response to her significant disabilities would be to stop her living, for her mother to say ‘no’ instead of ‘yes’ to Sara. The concept of ‘Lebensunwertes Leben’ (life unworthy of life) did not disappear 70 years ago on the defeat of Nazi Germany. It’s here now—in our modern, oh-so-caring-and sharing nice democracies. Well, Sara interfered with that narrative too and turned it on its head.”

In a recent article in the Daily Telegraph, Neil Lyndon wrote of a father’s pain, two decades after he and his girlfriend decided to terminate her pregnancy on the grounds of severe disability. After going into great detail about his son’s severe, extensive disabilities, and, by the sound of it, being advised to abort, he wrote: “Human beings aren’t made to take such superhuman decisions. We sexual mammals exist basically to reproduce, to suckle and to nurture our young and to let them go when they reach their majority, around the age of 21; not to determine whether they should live or die.

When God commanded Abraham to sacrifice his son, he removed from the father the moral responsibility for the decision and the deed. Nobody could have said it was the old man’s personal choice. “Thanks to the miracles of modern medicine, my girlfriend and I had no such consolation.” Being in a similar situation almost seven years ago, I can tell you now, after losing my most precious creation, how thankful I am that I don’t have that kind of pain. The pain that asks, “What if?” The pain that wonders what might have been.

The pain I am experiencing now, and will experience for the rest of my life, is worth it. Worth it to have those almost six years of joy, love, heartache and extreme pride. Worth it to have the happiness, the smiles and everything that Sara taught me.

Source: http://www.standpointmag.co.uk/node/6464/full