Twins with Down syndrome - our experiences
Abstract available shortly
Lambert, F. (2003) Twins with Down syndrome - our experiences. Down Syndrome News and Update, 3(1), 8-10. doi:10.3104/dsupdate.206
My name is Francesca, I'm 39 and have four children. Sean 12, Amber 4, and Eric and Joe 20 months. Eric and Joe are identical twins and have Down syndrome. I did not have amniocenteses during my pregnancy (the twins were in separate sacs) even though I was offered it as I was 36. I have always believed that it is a lottery having children, and even if you have a perfectly healthy baby, things can go wrong and they do. Eric and Joe were born at 37½ weeks gestation. I had them in the space of 40 minutes after arriving at hospital, totally naturally and no pain relief. They ran with me on a trolley to theatre! Joe came first like a champagne cork, and Eric was second in the breech position with his legs tucked up. I was up half an hour later walking round my room cradling the boys in my arms. They looked very wrinkly, they were smaller than my other babies but obviously they were twins!
Eric and Joe
On their second day the paediatrician came up to do the normal post-birth checks on them. She was a junior registrar and became concerned because Eric seemed 'floppy'. I said "oh well I expect it was the rapid birth and the fact that Eric took a while to get going…." I asked her what could be diagnosed from floppiness and she said that she would have to get the consultant to see me. I was told by my midwife, Marion, that the Consultant wanted to see both of us together. It was then I knew something was 'up' because they don't ask to see both parents unless it's serious. All these things ran through my head, cerebral palsy and the like. However, I told myself that whatever it was that it didn't matter because they were so beautiful. When my (now ex-) partner deemed to get some time off work to attend we were told straight away that they suspected Eric and Joe had Down syndrome. When the Consultant said it everything dropped into place. Of course they had! I knew the symptoms of Down syndrome well but I really think Mother Nature was letting me bond with these babies before I could take the next thing on board. The small ears, the wrinkly feet, the sandal gap, their rounded faces. I immediately rushed over to Joe and turned his hand over, there it was a single crease (only on the one hand though). The shock was phenomenal. It was probably the worst shock of my life. OK, the disability didn't worry me that much, but it was all the 'crap' that surrounded it, the health professionals, the education, and others' attitudes. I'd been through it all before with my eldest son who had semantic-pragmatic disorder (a mild form of autism) when he was little - it would be a nightmare and a double-whammy because I had to go through it twice! However, I looked at Eric and Joe and swore to them that I would do everything in my power to help them have a happy, safe life and get them educated so that they could do all those things that one wants from one's children.
I phoned most people and told them (this was the hardest thing) people didn't know what to say or do. I just told them that Eric and Joe were just babies, and were special, and that they were still to visit with cards, presents and congratulations. I was proud of my boys and I wanted to show them off to the world.
Post-diagnoses and health
We were in hospital two and a half weeks because Eric had severe neo-natal hepatitis (which can signify liver problems). They were scanned for heart problems (with a very old machine as the other wasn't available) and passed with flying colours. This was a relief. Eric had to have weekly blood tests for a month afterwards but the hepatitis finally went of its own accord as he grew and got stronger. They were lovely babies, very sleepy and hardly ever cried.
At three months Eric suddenly went blue one day in his cot, I picked him up and rubbed him and he got going again. This scared me. I watched him that night and noticed his breathing was erratic and he was stopping breathing for over 30 seconds and then spluttering and going again. I took him to the hospital. They kept him in for 2 nights and then discharged him. Two nights later Eric was having real problems sleeping/breathing and getting himself going again. I rushed him to the hospital in the middle of the night. They admitted him and he was there for 24 days. He was diagnosed with Obstructive Sleep Apnoea. His SATS levels (oxygen in the blood) were awful and we were very frightened that he would die. He was on a respiration monitor and being given oxygen several times a day. His heart was scanned again (on the big machine) and the Consultant found two small holes in his heart - a VSD and another at the top which most babies have before birth but it usually closes over. The VSD was a type of hole not usually associated with Down syndrome. Eric had an operation to remove his adenoids but they decided not to remove the tonsils because the surgeon was very worried he would haemorrhage and die and the risk was too great. Eric and Joe were terrifically popular in the hospital and the nurses 'fought' to look after him. Joe was a bit bemused by the whole thing and not to have his twin at home.
Since then, Joe and Eric have been fairly healthy. They do of course suffer more with infections, as most children with Down syndrome seem to do. They do have glue ear but not that badly at the moment.
Logistics of twins and mobility
Assessments are long and lengthy and of course the health reviews are complicated and exhausting. We, naturally, have two appointments and getting them to hospitals and clinics is very much a nightmare. I applied for a Blue Badge (disabled parking permit) early and got it! Social Services didn't even query it; they recognised that I had a difficult situation. I also applied for a Disabled Bay (parking outside my home) early too. Although the Council were slightly critical of their Social Services Department for giving me the badge, they too understood and after a bit of wrangling I got a bay when the boys were around one and a half years old. Both of these have been a godsend. I am able to park near to hospital entrances, don't have to struggle in narrow parking spaces etc. and can carry them safely indoors, or into their pushchair when we are out. It's not only the children but all their equipment that you have to think about. Two travel cots, double-buggy, bigger changing bag, two lots of toys to keep them occupied, two car seats. You have to be extremely organised! I've also had no shame in asking therapists to visit us at home wherever possible and they've kindly obliged!
The Occupational Therapist (OT) is also now arranging for a 'special' double-buggy (for children with a disability) for them. We have gone through two buggies, and they haven't been very suitable because of Eric and Joe's low motor tone they have caused difficulty with posture and sitting correctly. The Occupational Therapist is also arranging for a special table and chairs for them at a low level. Highchairs are not really good once they get into toddlerhood and positively dangerous I've found.
Obviously, at the time of writing the boys are not yet two. We have weekly Portage. I put their names down on the Portage list when we returned from hospital after the birth! They had an assessment visit at 2 and a half months and began Portage at six months which was ideal. I self-referred; you don't have to wait until the professionals do it for you. The boys have come on in leaps and bounds and Portage breaks up the tasks into small manageable steps which are fun and easy to manage.
We see a speech therapist once a month who does a joint visit on the day of a Portage session. This proves very useful and she comes to home.
We also attend an Opportunity Group twice a week. Eric and Joe have plenty of room to play; they have specially trained staff, mix with other children, and also have the input of the Portage service, speech therapy and the health service who advise parents and staff at the group. They really enjoy it. I've taken them since they were four months old and they really love it.
Eric and Joe
I'm hoping to attend Down Syndrome Education International (in Portsmouth) regularly to improve my education and also to help the boys. It is difficult to keep up with both twins and their development, and I also of course have two older children, one about to begin primary school and the other at secondary school. The plus side of the twin-thing is that they stimulate each other, and one does something and the other sees and follows. I hear that this is usually the 'norm' with most twins without a disability. I am glad that both twins have Down syndrome, because they are at the same level and are extremely good for each other. Hopefully too, they will always have each other and be mutually supportive.
The 'twin' thing
Eric and Joe are close and when separated Joe particularly finds it hard. He always hugs Eric when he sees him again. This brought a question to my mind about whether they should be assessed singly or jointly, i.e. in the same room, they obviously both have an individual assessment. So far, Eric and Joe have always been seen together and assessed one at a time. When I took them to the Clinic for Down's Children in London, they separated them for three hours. Eric I believe was fairly OK with this but Joe found it distressing and did not function as well as he does when Eric is in the same room as him. This may change as they get older and they may prove to distract one another too much, but we will have to wait and see.
I did go once to the twins and multiple births clubs, but found the other children there were quite demanding of Eric and Joe, probably because they were still babies and the others were older. I felt I needed to 'normalise' some of Eric and Joe's contact with other children and their families. I may go again, but it's not for us at the moment.
Eric and Joe are now little thugs (but extremely loveable ones!), who continue to wreak havoc, in other words they are normal toddlers! My older children adore them, and I have arranged respite care with Social Services (you have to push and push for this) for Eric and Joe so we can all have a break now and again. Eric is now walking with a baby walker, and nearly standing alone. Joe is nearly there, but his motor tone isn't as good as Eric's in his legs. However, Eric and Joe are beginning to use Makaton (sign language) really well and their comprehension is good for their age, in fact better than my eldest son's at the same age.
I can truly say that being a parent of twins with Down syndrome is very challenging. Having a child(ren) with special needs means that you have to work that extra bit harder as a parent and sometimes I just want to hide under my duvet for the day and have a rest! My partner left the family last September after we had family therapy. I was furious to be so let down but I still had my children and we're all now doing really well. In fact I cope better now than before.
I have high hopes for the boys. They're lucky because they'll always have each other, and they learn from each other and my older children.