My intention of this post is in NO way to try to scare anyone considering either adoption of a child with Ds or especially in NO way to make someone consider terminating a pregnancy due to suspected Ds of their unborn child. There may be a lot of scary medical issues that can occur in those with Ds BUT all these issues can happen to ANY newborn baby, toddler, young adult, and grown adult...Down syndrome or not.
My ONLY intention is to spread some awareness and hopefully teach someone something.
Babies born with Ds can be born just as healthy as many other children but they can also be born with medical issues. Some of them can be serious but thankfully due to advanced medical improvements they have a much greater chance at growing up healthy and active. The estimated life expectancy back in the 1930's for those with Ds was only 9 years old. There were many who died much younger due to major heart defects that had no cure at the time. Today many are living past the age of 50.
HEART DEFECTS... About 40-45% of those born with Ds have heart defects. There are several type of defects with the most common being an Atrioventricular Canal Defect also known as AV canal. It is a large hole in the center of the heart that allows a mixture of red oxygenated blood and low oxygen blood and then return to the lungs. This makes the heart pump extra blood to the lungs which makes the heart work harder and become enlarged. The body also receives less oxygen when all this happens. Babies usually grow very slow with this defect and high blood pressure can occur which would result in damage to lungs and blood vessels. Surgical repair is needed to help blood circulation go back to normal.
Another common heart defect is called Ventricular Septal Defect (VSD). These can be different size holes between the ventricles in which the same blood mixture happens like that of AV canals. Sometimes these close on their own and do not require surgery.
There are other less common defects such as holes between the two upper chambers (Atrial Septal Defect...ASD), problems with the heart valves, and defects in the major arteries attached to the heart.
Many times heart surgery is needed for these defects. Sometimes it is so severe that emergency surgery is needed right after birth. Other times, depending on defect, surgery may not be needed for a year or two if the hole has not closed on its own. Most children who have heart defects repaired successfully will go on to lead healthy lives.
Gastrointestinal Problems... Those born with Ds have a 10-12% chance of having some type of congenital malformation of the GI system. The most common anomaly is a narrowing or blockage of the small intestine called Duodenal Atresia. Other common GI anomalies include: 1) Imperforate Anus (no anal opening); 2) Pyloric Stenosis (blockage of the outlet of the stomach; 3)Tracheo-esophageal Fistula (abnormal opening between trachea (windpipe) adn the esophagus (food pipe); and 4) Hirschsprung's Disease (absence of nerves in the large intestine/colon. Some of these require immediate surgery to repair. GI problems usually present themselves right after birth with a variety of symptoms such as poor feeding, swollen belly, vomiting, no stooling.
Respiratory Problems... Respiratory infections are more often seen in those with the heart defects. Low muscle tone smaller canals and airways are also reasons for more issues. Sleep apnea is more common due to smaller airways and larger adenoids, tonsils, tongue or a combination of these.
Vision Problems... About 70% of those with Ds have some type of eye problems. Early detection if crucial for best chances at repair and correcting the problems. Some common problems include Strabismus (crossed eyes) which affects about 57% of those with Ds. This is an imbalance in eye muscles. Nearsightedness and farsightedness occur in 20-22% of those with Ds. Astigmatism occurs in about 22%of those with Ds. Cataracts and blocked tear ducts can also be a problem for some.
Hearing Problems... About 40-60% of those with Ds have hearing loss.
Thyroid Problems... Studies have shown that up to 54% of those with Ds have hypothyroidism. This can be serious if not detected and treated. They need to be screened yearly for this problem.
Orthopedic Problems... Increased looseness of ligaments between their bones and low muscle tone make those with Ds more prone to orthopedic problems. The most common problems are Metatarsus Varus (toeing in of the foot) and Pes Planus (flat feet). They can cause pain and difficulty with walking. Instability of the kneecap can also be an issue.
The most serious complication resulting from low muscle tone and joint laxity is the instability of the two upper bones of the back. This in known as Atlantoaxial Instability (AAI) and it occurs in about 10% of those with Ds. The lax joints allow for excessive movement between the two upper vertebrae, especially when the neck is extended or bent. They run a serious risk of spinal cord injury.
In about 1-2% of children with AAI the upper vertebrae slips and compresses and damages the spinal cord. Symptoms can include difficulty walking, increased clumsiness, neck pain, head tilt, fatigue with walking. Most children with AAI have no symptoms. They need to avoid contact sports, somersaults, trampoline exercises and other activities that cause excess stress to the neck.
Dental Problems... Those with Ds often times have dental problems such as missing teeth, delayed tooth eruption adn are prone to periodontal disease. This can lead to tooth loss.
Leukemia... This is a type of cancer of the white blood cells. About 1% of those with Ds develop Leukemia, which is 15-20 times higher than the general population.
This seems like a long list of problems that can occur but many times these do not affect their quality of life. Joey was born with a small VSD that did not require surgery as it closed on its own. It never affected him in any way. Isaiah had heart surgery due to two minor holes that never did close but he always remained healthy and his surgery was not that major. They both have the weak ankles and flat feet. Me and all my other kids also have flat feet also. Joey was born with Imperforate Anus and while at the time of learning that it seemed SO scary but today it is no big deal. He's had a few surgeries over the years to correct the defect to give him a better life. So far so good on the thyroid issues, they both recently tested negative! Joey's hearing and eyesight are fine at this point. Isaiah has an upcoming appointment with an eye specialist as he does have some issues. He will also need a hearing test to see where he stands there. Joey has been my healthiest child respitatory-wise with hardly any colds and only 1 or 2 ear infections. It will be interesting to see how Isaiah does. I don't have record of stuff like that on him. Joey passed his AAI neck xrays when he was 2 years old. I recently had them redone and he did not pass this time...in Bismarck anyway. Xrays needed to be sent to Minneapolis for a 2nd opinion. Please pray for good results. Isaiah passed his in Bismarck but I asked for a 2nd opinion on his also. Hoping to hear GREAT results soon.
I'm sure everyone knows someone who has one or more of these medical issues and they do NOT have Down syndrome. They can happen to anyone.
