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In Memoriam – 2

This is the second of two items that my mother typed out more than 25 years ago. I had very mixed emotions when reading it but ultimately I felt that it was a reminder that, despite all the nasty incidents and stupid behaviour hyped up by the press and news outlets, people and organisations are generally kinder, gentler and more understanding than they were 60 years ago.

This story is about the birth of my brother who was born with a genetic flaw now known as Trisomy 21 though formerly known as Down’s syndrome or (colloquially, and no longer acceptably) mongolism. It is the latter term that my mother uses as it was the common term at the time of birth and at the time she typed her story.

A child is born.

The history written by Dorothy Kathleen Lewis (1925 – 2017) about the birth of her first son

My pregnancy was normal. The first indication I had that something was wrong was in the delivery room when the baby was born; there was “oh” and silence then whispers. I asked what was wrong but was told nothing. The baby was put in a cot and the doctor came into the room and then he was taken out. I had not seen the baby – just knew that it was a boy. Again when I asked I was told that this was routine. Eventually the baby was brought back and given to me. When I saw him I thought he looked very odd and was so floppy. When I held him upright I could see he was a mongol, but prayed that I was wrong and this would go away. I asked to be told what the matter was with the baby and was told to tell my husband to ask if I was worried – which made me more suspicious.

Visiting was restricted and I did not see my husband until the evening. Fathers were just shown the babies at the nursery door and were not allowed to hold them. My husband was delighted that we had a little boy and I didn’t have the heart to tell him what I feared.

David had difficulty feeding and was put on a bottle at three days, the teat of the bottle made with a big enough hole for the milk to drip into his mouth because he was not sucking. When we went home, still not having been told of his conditions, he was being fed 8 times a day taking just 1.5 ounces per feed. Each feed took an hour to get into him, then at night it was back to bed for 2 hours and a repeat performance.

I took David to the child welfare clinic and again the actions of the people there spoke volumes, the health visitor hurried into the doctor and I was shown in – jumping the queue. (The clinic was held in our church hall which was next to the vicarage and I was very embarrassed that I should be singled out, although it was obvious why.) I asked the doctor what she thought and she said he did look mongoloid, but perhaps I should see the paediatrician where he was born.

At 6 weeks [ed: see photo] I went for my post natal and there was great concern in the waiting room as to how the baby was getting on. None of the other mothers who were there were being asked. I said he still looks like a mongol. My husband was still not aware of David’s condition or my suspicions, I wanted to protect him from the hurt I was feeling, but now I know it was not the kindest thing to do.

I then took David back to the Middlesex hospital and saw the paediatrician, who took him away from me, and whilst I sat at one end of a very large room he had David on a table at the other end with a group of students. I could not hear what they were saying, but when David was brought back to me I was told: “You have a complete vegetable; he will never walk or talk – just lie in his pram and stare up at the sky. The best thing you can do is to put him in a home and forget you ever had a baby.” I was devastated; I couldn’t run away from it any more. He had an enlarged liver and spleen and his spine was curving outwards. When I held him in my arms it was a little like a floppy parcel and there was no buoyancy at all.

When I got home I couldn’t hold back the tears that had been stifled all those weeks and I had to tell my husband. It was dreadful, I think it would have been better had we been able to grieve together in the beginning.

From then on everything David did was a milestone and he brought us a lot of joy. Just before he was five I had to take him to County Hall in London for assessment. That was a nightmare because by this time I had two other children – little boys – it was necessary to take the older of the two with me, a very busy child. We went into a large room and an elderly fussy lady had a lot of questions for David to answer. He was shown pictures and asked what they were. He hid his face from her and was saying the words to me, many of which he already knew, but because he was not answering her they were crossed out. So his assessment was a very low one.

I don’t think it would have made a lot of difference whether he had answered her he so surely wasn’t school material. He had been going to a junior training centre from the age of 3½ because I was expecting Jonathan. A social worker who came to see me at that time asked what sex I would like my third child to be and I said I didn’t mind so long as I had a normal healthy child, and she said that was a funny answer to give – I didn’t think it funny.

People’s reactions were very different 37 years ago [ed: now 64 years]. Once it was made known that David was as he was people who had known me from childhood would cross the street [to avoid speaking to me], they didn’t know what to say. But we didn’t hide him away and when we went on holiday we just said three children and we sometimes got a reaction when we arrived, but David was always well-behaved and everybody loved him. He learned a great deal from his brothers and I thank God he was our first child.

[Dorothy Kathleen Lewis: Banbury 1990]

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Footnote

While copying up this story I was prompted to look at a few statistics from the UK’s Office of National Statistics for 1953 (and 50 years later); in particular the stats about child mortality and measles caught my eye.

Infant mortality for England and Wales

Year Births Still-births Died with 1 week Died within 4 weeks Died within 1 year
1953 684,372 15,681 10,127 12,088 18,324
2003 621,469 3,612 1,749 2,264 3,306

Don’t forget when you read the mortality figures that the 2003 numbers will include births that could be anything up to 8 weeks premature. I think anything more than about 2 weeks premature would probably have ended up in the still-births column in 1953.

Measles (England and Wales).

Year Cases Reported Deaths
1953 545,050 242
2003 2,048 0

Addendum

I’ve received a private email pointing out that some of the cases reported as still-births in 1953 would now be identified as murder, where babies born with obvious viability issues would be smothered at birth – sometimes without the mother even knowing.