Trisomy 18 blog

Medical experts used to say (and some still do) that leading a normal life with trisomy 18 isn’t possible. The Lancet (worlds’ leading medical magazine) also agreed with this statement by writing: “A newborn infant with trisomy 18 should be considered as a patient with a hopeless outlook who ought not to be subjected to invasive procedures . However the example of Lane, a boy diagnosed with full trisomy 18 when he was only 3 days old proves these claims wrong. His parents say that Lane is not alive because of a miracle, but because they have chosen life for him.

Trisomy 18, also called Edward’s syndrome  is a chromosomal disorder that happens because of non-disjunction during cell division and there is an extra 18 chromosome present  which according to Genetics Home Reference (http://ghr.nlm.nih.gov/condition/trisomy-18) is one case out of 5000 newborn infants (fig 1).  Individuals with trisomy 18 have numerous health problems regarding their organs, birth weight and height. Other features are a small, abnormally shaped head; a small jaw and mouth; and clenched fists with overlapping fingers. Because of serious medical problems majority of the babies with this syndrome dies within their first month of life. Only 5-10 percent lives through their first year, but has severe intellectual disability (fig 2).

As his father Alex Hauber explains that after getting the results of the FISH test he was informed that nothing could be done to improve his son’s heart condition. Although the situation wasn’t promising Lane kept fighting and was stronger and stronger and his fight improved so did his father’s.  Alex also said that: ”My journey with Lane has given me a new perspective on what the pursuit of happiness really means…take each day as it comes, enjoy the little things, live…love…laugh to the fullest. He has taught my family how to work as a team, to treat all life with respect, patience, and to truly love unconditionally! As hard as this journey with Lane can get at times, I’ve been blessed to realize the strength that I possess as a human being and as a father to the most beautiful spirit I have ever encountered (fig 3).” Lane is now 3 years old and Alex has dedicated his life in spreading the awareness of trisomy so the organization called “Trisomy Advocacy Group” was created.

In conclusion even though surviving and fighting trisomy 18 is difficult the Hauber family and mainly their son Lane have showed that love, belief and no quitting there is always hope and nothing is impossible (https://www.lifesitenews.com/news/trisomy-18-bella-santorum-and-the-truth-about-miracles).

                                                                                  

 fig. 1 trisomy 18 karyotype

 fig. 2 an individual with trisomy 18

 fig. 3 Lane and his father