The places that medical research has gone is incredible! There's a mountain of information online about what Down Syndrome is and how it comes about, so I thought I'd cover the history. Compared to a generation ago things are certainly better. The outlook for people with Down Syndrome has changed remarkably. There are of course people with Down Syndrome in their 40’s and older who have had wonderful and fulfilling lives, but not many for a very simple reason; most of them died. Down Syndrome is associated with a bunch of medical complications including heart defects, a higher chance of infections, thyroid conditions, leukaemia and pneumonia. Without modern medical treatment, many of these conditions proved to be fatal. In the 1950s a baby born with Down Syndrome was considered lucky to live into their teens and had a life expectancy of 12 to 15 years. In the 1960s it was only 18 years. The figure rose sharply in the 1980s as techniques to repair heart defects common in people with Down Syndrome were perfected and increasingly performed. Nearly 40% of people with Down Syndrome have a heart condition and many would die, or be severely disabled if the condition wasn’t treated. In the 1950s many of the conditions simply couldn’t be treated. The repairs required open heart surgery and techniques which have only been practiced in recent years. Sadly people with Down Syndrome also faced prejudice and discrimination and were denied life saving treatment on account of their disabilities. Today life expectancy is 50 to 60 years on average and most studies conclude that they don’t really know what will limit the life expectancy of those born today who survive infancy and receive appropriate medical care. Lincoln had heart surgery just after his 1st birthday (about 2 months after his diagnosis), and he doesn't even have a mark! Its so amazing and uplifting to know that anything is possible!! He suffered from pulmonary hypertension, so they closed his septal defect (heart condition). To further briefly explain what happens in an septal defect catheter-based procedure, a cardiac catheterization involves slowly moving a catheter (a long, thin, flexible, hollow tube) into the heart. The catheter is initially inserted into a large vein through a small incision made usually in the inner thigh (groin area) and then is advanced to and into the heart. In our case, the cardiologist surgeon used an ultrasound probe passed down the esophagus to allow her to see the heart structures and blood flow as the device was being placed. In addition, a special balloon on a catheter is moved to the area of the hole and inflated across the hole in order to measure the size of the hole when it is gently stretched. A closure device is moved through the catheter to the heart and specifically to the location of the heart wall defect. Once in the correct location, the closure device is allowed to expand its shape to straddle each side of the hole. The device will remain in the heart permanently to stop the abnormal flow of blood between the two atria chambers of the heart. The catheter is then removed and the procedure is complete!! In addition to living longer, adults with Down Syndrome are now living fuller, richer lives than ever before as family members and contributors to their communities. Many even form meaningful relationships and eventually marry!! As time has gone on, I have been approached by more people who have "noticed" Lincoln's diagnosis, mostly by those who have a story of their own to share! Its always great to hear others positive stories about their relatives or friends who also live with Down Syndrome. Its a great way to stay motivated, and to look at Lincolns future as a future! I'm so happy with how far things have come in the past 50-60 years, and even more excited to see what the future researchers will bring! Obviously not a cure - but many more ways to help people who have Down Syndrome live independent or semi-independent lives!!
“Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” – Maria Robinson
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