I was officially born on February 19th, 2006, but like all lives, it started about 9 months before with you know what. I was born in Greenwich Hospital, Connecticut. Mamma was pregnant and she really wanted a boy since she already had three beautiful girls, Tailor, Felicity and Lilibet. Felicity and Lilibet were two rather mendacious twins with very curly hair, brown eyes and yes, big ears. Tailor had none of these except for the brown eyes but she had a different Dad so one had to expect a few differences. They all lived by the beach in Westport.

My time inside Mamma seemed to be going swimmingly. Mama had very little sickness and Poppy was rushing to London every month, where he operated on his European patients. (For a new-born I know a lot about these things). They were both very busy and my first day breathing air was planned to dove-tail neatly into all of their plans.

On Sunday morning the 19th of February, my Poppy and my Mamma got everything together to arrive at the Hospital. We were running late and my Obstetrician called me to find out where I was. After we arrived, Mama was plugged into to all of the television screens with wiggly lines and numbers and an intravenous tube was put into her hand. They gave her some medicine into the tube which made the sac around me contract and push me out. Everything went to plan and after a short Labour, I popped right out at about seven ‘o’clock that evening.

I didn't weigh much and I didn't have a lot to say, but I was pink and breathing well and my Apgar score was 9 out of 10. I had passed my first exam.

Poppy was a doctor and this was his eighth child. His other children were all girls except for one boy. He would have liked another boy, but all he could say when I was born was that he just wanted a healthy child. I appeared to fit the bill. I was shipped off to the nursery and Mamma went to her room and Poppy went home. All -in-all it had been a pretty good day for all of us.

It was a shame that the Pediatrician had to spoil my fun. It started the next morning when Poppy was driving to the Hospital with Me-Mum (my Grandma). The Pediatrician called Poppy and said that he would like to speak with him and Mamma ‘together’ when poppy arrived. I was lying in my crib minding my own business and doing a very good impersonation of a normal health baby when the Pediatrician completely blew my cover. He told my parents that he thought I had Down’s syndrome.

This was a quite a shock for all of us. If you had said I had five legs, it would have had the same effect. Neither Mamma nor Poppy knew much about Down’s syndrome although that was going to change very quickly. It turns out that I was a complete surprise to everyone. None of my tests during the pregnancy had shown that I had this condition. My blood tests were normal and my ultrasound didn’t show any heart problems. If I had been given an amniocentesis where they stick a needle into the sac around me and take a little tissue, my secret would have been out, but they didn’t. However, I seemed to be doing pretty well and nobody thought I had any major health problems other than this giant black mark that the Pediatrician had put on my hospital record. They were wrong again.

That same day, another doctor called a Pediatric Cardiologist came to check me out. He put a funny probe on my chest and took a long hard look at my tiny heart. He was not happy. And so for the second time in two days, I was the bringer of bad news. This time it turns out that not only did I have Down’s syndrome (as if that was not a big enough Downer!) but I now I also had hole in my heart which needed to be fixed. I was full of surprises.

Dr. Snyder, the cardiologist, sat down that evening and explained to Mamma and Poppy that I had a hole in my heart called an atrio-ventricular canal and that it would need to be closed. Before my surgery, I needed to put on some weight and the plan would be to fix my hole in about three months. Wrong again.

Whilst all this was going on, I think that Mamma and Poppy were both a little down and trying to cope with me and all the problems I might give them. If the truth be told, I think they were feeling a little sorry for themselves. I think some parents would have kept on feeling that way but here I finally managed to get lucky.

Poppy thought about this for a while. He looked me up on the Internet to find out about Down’s syndrome. I was being Googled for the first time in my life. It should tickle but it doesn’t. He figured out that when life gives you lemons you should make lemonade and as the Italians say, ‘Not everything bad comes to harm you’ (Non ogni male viene a nuocere).

One of his favorites saying was to look for solutions when you had a problem. When he was feeling very down he would say ‘Poor me, poor me, pour me another’. Feeling sorry for yourself just doesn’t make you feel better, it made you feel worse. GBS said something similar.

‘People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can't find them, make them.’
George Bernard Shaw

Although the biggest surprise I still had in my back pocket was that I looked nothing like a lemon and I wasn’t the least bit bad. But my parents didn’t know that yet.

The next morning, Poppy came into the Hospital room and sat down opposite Mamma in her bed and explained that their job was to be my advocates. I was only two days old but I already had my own home-team pinch-hitting for me. Life was getting better by the day.
The day after that, I went home.

I wasn’t a very loud baby. I didn’t smile, tell jokes or make small talk. In fact, I spent most of my time eating and sleeping. And yet it seems that I was developing a very large group of friends of which many adults would be envious. My Pastor, Pastor Horne, from the local church, brought me a yellow rose. I had lots of presents and flowers and everybody wanted to see me. I was considered ‘adorable’. I had friends and family in Connecticut, Texas, Glasgow, Liverpool, London and Ipswich.

Everything would have been fine, basking in all of this adulation, except that I was steadily getting more and more pooped. Despite all the help of my cardiologist, the prayers, good wishes and the drugs to keep to keep my lungs clear, I was having a tough time drinking my bottle without getting short of breath and falling asleep.
And so, instead of the original plan for surgery at three months I was fast-tracked to April 12th. Hopefully I would be fast tracked for Airport check-ins too.

JAN MODEST QUAEGEBEUR, MD, DR. ‘Q’

My surgeon was Doctor ‘Q’. He came from Belgium but he operated at the Children's
Hospital at Columbia Presbyterian Hospital and at the Heart Hospital in Monaco. I don’t know when he was last in Belgium. He traveled to Monaco every month leaving on a Saturday and returning ten days later on a Tuesday. Poppy did the same sort of thing, except to London. I think all of these surgeons are a little meshuga.

Another early morning ride in a car to a Hospital, but this time instead of being inside of Mamma’s tummy I was sitting in a car seat. I slept all the way, even though I was a little hungry. We drove into New York City on a Wednesday morning catching the beginning of the rush hour just as we reached the George Washington Bridge.

The Morgan Stanley Children’s Hospital of Columbia Presbyterian Medical Center, sits on Washington Heights at 168th Street and Broadway. Poppy was a General Surgery Resident at Columbia Presbyterian Hospital in 1982 but he had not been back since. Now there was a new Children’s Hospital and the neighborhood had improved a lot. Rents had doubled and the crime rate had dwindled to a fraction of its 1982 levels.

When we arrived at 6:30 a.m., I was carried up to a waiting area on the 9th Floor, where a nurse weighed me again and took my temperature with a thermometer under my arm. Finally I saw an Anesthesiologist who would make me sleepy during my surgery and the nurse who would be helping Dr. Q. The last thing I remember was Poppy handing me to the nurse at the door of the Operating Room and saying ‘Good Luck’.

The next few hours were a little tense. Mamma and Poppy had a snooze on the sofas in the 9th Floor ICU waiting room and at one point Dr. Snyder came by to tell them that I was on the ‘pump’ which meant that they had redirected my blood through a machine which would breath for me whilst they fixed my heart. The next news to arrive about three hours later from my ICU Nurse Gillian was that I was off the ‘pump’ and that everything so far was going well. They were looking at the heart with a probe (Called an ‘Echo’) to see the valves and make sure that inside, hidden out of sight, the blood was pumping in and out of the heart without getting mixed up or going the wrong way.

My heart used to be like a busy freeway without a median so that cars traveling in opposite directions would crash into each other. This used to cause a lot of traffic jams and the cars would get backed up. In the same way, the blood in the heart would get jammed right back into my lungs and when your lungs are full of blood they get very heavy and hard to move. Now I had a median, thanks to Dr. ‘Q’ and the cars would swish by each other without any rubber-necking or crashing and no traffic jams. My lungs were beginning to empty and it was a lot easier to breathe.

My Poppy was a Plastic Surgeon so after the heart was fixed they had to ‘close’. Everyone was little bit nervous about giving me a pretty scar. At the end of the surgery, Dr. ‘Q” came along and told my Mamma and Poppy that the surgery had gone well and that he was happy with the result. For a short life, it seemed that I had passed another big hurdle.

Most people lead lives of remarkable uneventful-ness. Mine so far, had lasted seven weeks and three days and I was beginning to hope that I could also lead a life, a little less eventful. Thoreau said something to the same effect before wandering off to Walden Pond in my own New England.

Room 904
My first day after surgery was a blur. I remember waking up with a tube on each side of my nose and tubes coming out of each arm and yet another one coming out of my bladder. There was a bigger tube coming out of my chest that blew bubbles by the side of my bed. I was a very little baby in the middle of an adult size bed. I wanted to get my breathing tube out but my doctors felt it was safer to leave it in. I had to wait until the next morning. Mamma and Poppy went home.