The Ups and Downs of Life

The mask made the room unreal and my eyes roll upwards into my head - although it removed no pain, it did help me to forget it in-between.

“Just a couple more big pushes now, then it’ll all be over.”

“I can’t.” It was eleven hours since I’d entered that hospital.

The knifing pain began its build up yet again, I breathed in more forgetting gas, panting through my pain and fear and, as the pain intensified from a turning knife to tight, crippling cramps, enveloping and savage, I pushed - I had no choice.

“It’s a boy!” The midwife cheerily declared and I expected him to be immediately handed to me, but he wasn't.

“He has a very short cord, we need to check everything’s ok.” And they placed my son on some surface somewhere to check him over.

“Do you have a name for him?”

“Benjamin.” Andy replied.

The busyness from the gaggle of nurses became suddenly slowed and their chatter subdued to a whisper, inaudible. A nurse left the room, I lay back and closed my eyes. 

I must have slept for she seemed to re-enter instantly with a doctor in tow. “We’d just like the doctor to take a look at him, you can hold him in a bit.”

More mumbling, imperceptible exchanges. Andy was scrutinising their faces, straining to hear what they were saying, he looked worried.

The nurse finally placed Benjamin in my arms, Andy peered closely at him, stroking his damp head.

“Wow I’m a father! Hello baby, I’m your Daddy!”

The midwife spoke, “We suspect he may have Downs Syndrome. But we need to do some blood tests before confirming our suspicions.”

What? My befuddled brain exploded!

“It’ll be a week to ten days before we have the results back.”

I looked into my baby’s face, it was red and misshaped from the trauma of birth. But Downs Syndrome? No! They must be mistaken!

“You can hold him for a minute, then we must put him into an incubator to keep warm.” And all too soon she took him again and left the room.

Those two words she’d spoken so easily battled with my previous inner visions of long chats and board games, horse-riding and nature trails, homework and travel. . . 

Another nurse helped me into a wheelchair and, with Andy pushing, led us through the numerous corridors to the Intensive Care Baby Unit, to where Benjamin was. I was in a dream - no a nightmare and my inner turmoil could be neither voiced nor silenced.

“The cord was too short,” She began, “and it pulled out a part of his bowel. We’re worried that because of it he might have an intestinal blockage, so we’re sending him to a London hospital, they’ll sort out the hernia and give him a barium meal test to check for blockages.” 

London hospital? Blockages? Downs Syndrome? What next?

“Can I go too?”

“No I’m sorry,” she replied “They have no beds for parents. The ambulance will arrive in thirty minutes.” And suddenly she was gone.

We had such a short time to gaze at Ben in his incubator, searching his face for signs of Downs Syndrome while mulling over the ramifications. His head, still misshapen from his battle, seemed too big for his tiny body. He looked lost and alone, this tiny, flailing new being screaming, red faced at the indignity of that sterile box. I wanted to pick him up and hold him close, try to obliterate those two terrible words, but it was not allowed.

Once Ben had left, Andy wheeled me to the private room they had offered ‘under the circumstances’, returning to the farm once I was settled. It felt empty, I felt empty and the baby’s cot beside the bed was empty - the sun, pouring through the open window, mocked my grief. Various nurses came and went, but all avoided eye contact and conversation - whether through embarrassment of my tears, fear of being asked for support or maybe the idea of having a child born with a disability was so terrible they could think of nothing positive to say, who knows. But their attitude towards me compounded my feelings of desolation and despair. 

Later that afternoon Andy returned, haymaking thwarted once again by more sudden rain, so the paediatrician took the opportunity to see us together.

“The blood sample of your baby is for chromosomal analysis, or karyotype, which will determine if he has Downs Syndrome. Most people have 23 pairs of chromosomes, 46 in total, but people with Downs Syndrome have 47, three instead of two of the chromosome 21. One in eight hundred babies are born with Downs Syndrome, it’s very common.” I sensed this was a speech he’d given before.

“The physical signs, on which we’ve based our diagnosis, are numerous, but eight are enough to signal the need for a blood test. Your baby has more than eight. He has the simian crease on his hands.” – I didn’t know what a simian crease was, but logged it in my mind to ask later - “He has three holes on his head instead of two, his eyes slant upwards slightly and have the typical Epicanthal Folds. The bridge of his nose is flat, his ears are small, he has a large gap beside his big toe, and both little fingers are slightly bent. He also has Hypotonia, or low muscle tone which makes him a ‘floppy baby’. These are all signs of Downs Syndrome” He looked into our faces to ensure his words were clear. They weren’t, but I nodded.

“He will be mentally handicapped.”

Oh my God people with Down's Syndrome were, of course, mentally handicapped! Those words hadn’t even entered my head…..my despair deepened.

“He’ll never learn to read or write. He won’t be able to ride a bike or play football like other children and, because of the bowel-hernia, he’ll probably have intestinal problems. Most children with Downs Syndrome have heart problems, holes in the heart or faulty valves, and they often have respiratory problems - so he could frequently suffer from bronchitis. Because of the hypotonia it’s unlikely he’ll be able to feed properly.” My mind reeled, surely this isn’t happening.

“You don’t have to keep the baby, you can leave him here; babies with Down’s are a very popular adoption choice nowadays as it's become almost impossible to adopt a normal baby.”

My eyes snapped to his face, my reply perhaps a little harsh but I couldn’t stop myself. “I have cared for every sick or injured animal or bird that has ever came my way, to reject my own son, whatever his problems, is NOT an option!”

His face coloured slightly, “Well I expect you’ll want some time together for everything to sink in. Any questions?” I had a thousand, but could voice none, we both shook our heads, then turned to study the floor as he took his leave.

We were dumb-struck by the prognosis and sat on that hospital bed in silent shock.

Andy finally spoke. “Blimey! He sounds pretty sure of his diagnosis, looks like this blood test, this karyo thingy will show up positive.” I nodded.

As we gradually grasped the implications of all we’d heard, we began to understand what it could mean, what it might bring . . . and the future looked bleak.

“Sounds to me like he’s going to be pretty sickly and weak,” My rugby playing husband began, “He’s got a lot wrong with him, and it doesn’t sound likely he’ll improve much over time.”

“No, it doesn’t. Oh Andy, he’s going to be incapable of doing anything and with all those health problems . . . do you think he’ll survive?”

“It may be better if he doesn’t, it could be a happy release for him . . . and for us.”

I knew he was right on the first count, and possibly on the second one too. But I’d carried this child for nine months . . . and my dreams of all the things we’d do together, all the fun we’d have . . .

“You mean you think it’d be better if he died?”

Andy couldn’t meet my eyes and stared at his boots. “Yes.”

“But maybe they’re wrong, maybe the tests will be clear.”

“Maybe, but that doctor did seem pretty sure of himself, he’s probably right, I mean, it is his job, he should know.” And my silence screamed acquiescence. 

Later, after Andy had left, I had another visitor, a midwife in the hospital who’d heard of Ben’s birth. She was the first member of staff who looked me in the eye, who sat on my bed, who asked me how I was feeling and actually wanted to know. Her name was Mary and I will never forget the kindness she gave when I needed it most. I repeated what the paediatrician had said.

Her face clouded over and her voice rose an octave, accentuating her lilting Irish accent. “Would he go and speak to parents of non-handicapped babies and warn them that their baby could grow up to become a drug addict, an alcoholic, a thief or maybe even a murderer? I don’t think so!”

She glowered at the door, no doubt sending her strong opinions tripping down the corridors towards his office. “So how can he presume to know what your son may or may not achieve or what ailments he may or may not have? He doesn’t know, how can he? He has merely put all the worst possible scenarios together and given them to you as fact – they are not!” 

I allowed myself an inward smile, this small, middle aged ball of fire was my first ally.

Her tirade continued, “And they should never have sent to him to London without you! Every mother needs to bond with their new baby and it’s essential with a special baby like Ben, you can’t bond with him fifty miles away!”

With her fury still hanging in the air she excused herself; she had to get back to work. But after that first visit she came whenever she could.

The following day she arrived gushing with excitement. “I’ve just had a little word with those on high, I explained the importance of bonding and I’ve managed to get permission for you to visit him!”

So the very next day my sister Philippa drove me the two hours to London. We arrived at the hospital, found the right department and approached the desk, explaining to the nurse why we’d come.

She barely raised her head and nonchalantly flicked her hand at a door, ‘He’s in there.”

Philippa and I shot a glance at each other, our eyebrows lifted by her indifference, then entered a room filled with around thirty incubators - colourful mobiles dancing on the ceiling made it feel cheery. We walked slowly around and eventually located him . . . he was beautiful! The swelling of his head had subsided, he was not angrily screaming, red-faced at the world as before, but sleeping peacefully, his face serene and his body relaxed despite wires protruding from every part of him.

“He may have Downs Syndrome.” I whispered, “But he’s a darn sight better looking than all the other babies put together!” And he was! Philippa nodded agreement and we laughed - for me it was the first time since that traumatic news, and it felt good!

***

The following day Philippa searched the public library for information on Downs Syndrome, but she could only find basic medical information backed up by old fashioned photos of adults with Down’s in ill-fitting clothes and pudding basin haircuts. While she was there, Mary popped in to see how our visit had gone.

“Oh Mary, thank you so much for organising that, it was wonderful to see him, he’s gorgeous!”

“They all are my dear, I’ve always found that Down's babies are the best looking of all babies, and I’ve seen plenty!” She smiled and I noticed a dimple on each cheek, “I’ve brought you something.”

She handed me a parcel wrapped in blue paper, “I made this for Ben - for when he returns.”

As I opened it and lifted out a pale blue hand-knitted matinee jacket, she pointed at one of the front panels which was a slightly different blue to the rest, “It has extra bits,” She said, “Just like he does.”

“It’s beautiful, thank you.” Those annoying tears welled again and as she hugged me I could feel her compassion oozing through the starched uniform.

The time, effort and understanding Mary gave me in those early days was my first ‘Up’ of Ben’s life. There were many more to come of course, but I didn’t know that at the time and could not possibly imagine.

“Oh Mary, I want Ben, I just don’t want him to have Down's Syndrome.”

“I know.” She said gently.

“Why me?”

“You don’t realise it now, but he’s a gift, he’s special and special children are only given to special parents, I know you are one of those parents. You’ll raise him with love and the love you receive in return will be tenfold and the joy he’ll give you in the years to come will astound you. I know it’s hard now, but you’ll see.” She smiled, patting my leg. “Now your first task is to mourn the baby you thought you were having, only then will you be able to welcome Ben.”

“When I was pregnant . . .” I said wiping my tears, “We gave him the nick-name Thumper . . .” We both chuckled. “That’s all we ever called him, but that baby in London isn’t Thumper, and from the moment he was born we’ve not used that name, you’re right, he died when that other baby was born.”

“And that’s why you’re grieving, it’s normal.”

“Before, I’d dreamed of all the wonderful photos I’d take of him, but I won’t want to now.” And images of my child looking like a miniature adult, with the pudding basin haircut and the ill-fitting clothes flooded my senses, “He’ll be so ugly!”

She gave me a hard look. “Was he ugly when you saw him in London?”

“No.” I replied in a small voice.

“No! So why will he be ugly as he grows up?”

“I don’t know.” I muttered. “But I’m not sure I’ll be able to love him.”

She smiled at me. “You already do.”

***

After four days Ben was returned to me, the tests completed. He had no intestinal blockage, no heart problems and has never had bronchitis – so much for the paediatrician’s projected diagnosis! He was a beautiful healthy baby who just happened to have Downs Syndrome.

I spent his first day back beside his incubator, scrutinising his face for signs of the syndrome and they gradually revealed themselves; how his little tongue would often protrude from his mouth and how his eyes looked slightly oriental. I unfolded his hand and compared his palm to mine, mine had two distinct lines running across it, while Ben’s had just one, dead straight, dividing his palm in two. I now understood what a Simian crease was, but I also understood that the lie I’d so wanted to believe, had become unravelled - I knew the blood results would prove positive.

While Ben remained in intensive care for another week he was used for student training. I was often beside his incubator when a group of fifteen or so white coats were brought alongside and the many identifications of Down's Syndrome pointed out to them. Without saying hello and, as if I didn’t exist, the dreaded paediatrician would instruct his students in a cold, technical and clinical way, as if Ben was just an object, a mere cell on a microscope slide and I, the mother still reeling, had no feelings. On a good day one of the students might show awareness of this cold approach and tip me a nod or a half smile to acknowledge his discomfort.

Once the long week was over Ben was brought to my room and placed in the empty cot beside my bed; the room suddenly felt warmer, brighter and no longer lonely. Andy had brought my camera and I immediately started clicking, my baby was beautiful and yes, I wanted to take his photo!

During those three weeks in hospital there were few Ups, mostly Downs; due solely to the conditioning throughout our lives, of society’s attitudes towards disabilities, the stigma, the fear, the rejection of anyone who is regarded as ‘different’ from ourselves. I don’t know what the statistics are now, but in 1988, when Ben was born, fifty percent of babies with Down’s were being left in hospital, to be fostered or, if they were lucky, adopted into more welcoming families. 

And even now I still feel angry at the way that paediatrician delivered his speech. He left us nothing to look forward to and no place for hope. I can’t understand how a man, in his position of authority, could be so negative and damning of any child to cause the parents to feel that their death would be the better option. But he did. And instead of the joy and excitement I should have felt at the birth of my only child, Ben was welcomed into this world with tears, and misgivings, the option of leaving him behind and the wish for a naturel release by his parents! 

Despite his predictions, Ben achieved everything the Paediatrician claimed he wouldn’t, and so much more! And all these years later I look back at those weeks of tears and know that had I been aware of everything Ben would bring to my life, not one tear would have been shed, Mary was right, I would have celebrated his birth for the wonderful gift it was!