Jane (not her real name), was exposed to rubella as an eighteen year old student nurse who did not know she was pregnant. Her daughter, Beth was born profoundly damaged by congenital rubella and was not expected to live. She is now 34 years old. Jane describes how rubella has devastated Beth’s life, and the effects it has had on her family.
"I came out of a very protective secluded environment and went nursing and thought it was fantastic that I was free. I was working in the paediatric wards in my first year and I was not aware at the time but I must have been caring for young children with rubella. Subsequently I found myself pregnant. I was 18 years old. My GP doubted that I had rubella in the first place and said there was no choice about a termination of the pregnancy. So the pregnancy went through and I had relative peace of mind although there was a chance that the baby may have been infected by rubella.
I delivered when I was nineteen and while I was still in the maternity home they detected cataracts on her eyes. She had a heart murmur and they felt that the outlook was very bleak, they didn’t think she would survive and they thought that she would be severely mentally retarded. Right from the beginning of the pregnancy I had liased with social welfare as far as putting her up for adoption. So I kept in contact with the hospital and after a couple of months, I suppose, they contacted me and said they had found a family who wanted to foster and adopt. Later the adoption came through but it was evident that the disability on the child was severe. So the family fostered her, and up to the age of six I had regular contact with her. Then they approached me regarding adoption. I agreed and on request of the adoptive mother I dropped out of the scene.
This was an absolutely devastating experience for me. It made me grow up in a very big way as you can imagine as a 19 year old. I was devastated at having produced a child so severely disabled. I had a huge sense of guilt that took me a long time to resolve. I subsequently married four years after I had delivered my daughter and my husband was aware that I had had this child and that she had gone up for adoption. I then was out of contact with her until 1996 when I received a letter from the adoptive mother asking if I would take care of Beth again. I had done a lot of grieving and coming to terms with the whole incident and the adoption and closing the book; well I thought I had. Opening it again was really difficult for me but I felt I had a moral duty and didn’t have a choice.
Beth is in care in a Quality of Life Trust which is an organisation which has been set up by parents with children who have had congenital rubella. They are all blind, deaf, mentally retarded young adults and it meets their specific needs. All were born during the same rubella epidemic that was occurring at that time. There are caregivers there for 24 hours a day who basically prepare their meals and ensure that they are fed, they look after their hygiene and basic health and make sure that they get to their activities within their mental capabilities.
My daughter now is 34. She does not speak, she has no eyesight at all, she is completely deaf, her sensory input is through vibration and smell. One of her activities is doing puzzles, the sort of puzzles that you would give to a two year old. Wooden type puzzles, which she does all by touch. Because I have adopted her out in the past, as a birth mother I have absolutely no legal rights at all. Once they are over the age of 18 they are considered to be independent even though they are disabled.
I have moved on. By the time I got over the initial shock in 1996, my relationship bonding with her is as if she is a patient. It is that kind of relationship. I don’t feel that deep maternal love that I do with the other children. And there is also, I suppose it is hurt, that that relationship is never able to get established, of a mother and a child because of her disability. So that is another grief. I think she only knows me through the perfume I wear.
It took me a long time to go into another pregnancy, I was married ten years before I was prepared to have another babe. The other children are just beautiful, fine. Certainly it has underlined the need for vaccination with them. They are able to see the effects of rubella which is very potent experience. At the Lodge there are five residents there now, all with the same kind of disabilities. I can see that they will grow old together, and I don’t know what their life span will be. Mind you I was told that Beth wouldn’t live for eight weeks but that didn’t happen and often it doesn’t pan out that way, so I don’t know what her life span will be. Certainly there is going to be a period of time when hopefully rubella just isn’t seen again, because to have it in the early stages of pregnancy is just devastating. I wouldn’t wish it on your worst enemy.
I can see it as being a problem in another ten years as we all start to die off. A couple of the parents there are getting quite old and the system is going to fall down when we are not there. Then what happens? I guess one of the reasons I have involved my other children is that if I drop dead tomorrow someone is going to have to keep coordinating the care. It has been very painful for me, and I carry that for the rest of my life.
This is the first time that I have told my story. I find it so very sad that she is a human being in our society but doesn’t participate in it at all. She is here, she just exists. For me if you have read this story there is no question about a choice of whether you immunise your children or not. The result, the potential result if you don’t, is horrendous for your child."
This story has been edited from the transcript of a recorded interview and is posted with written consent for the story to be published on IMAC's website.
