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| Otto Matthew (5 months) |
As you well know, we welcomed Otto Matthew into our family officially in July. We are so excited to finally have him here and to share all of his adorable photos with you. Because you are a part of our lives and will, undoubtedly, also be a part of Otto’s, we want to share some news about him with you.
While pregnant with Otto, our first, routine ultrasound had shown a soft marker for Downs Syndrome. After a second ultrasound and some additional testing via bloodwork, Downs Syndrome was ruled out, but our perinatal specialist wanted us to come in for a follow up ultrasound. One of the markers they saw was a shortened femur, and his head and stomach measurements weren't matching up with his legs. They wanted to check on Otto’s growth and make sure they were providing the best care possible in preparation for his arrival.
In late April, we went in for what would be our third ultrasound. We were comforted to know that Downs had been ruled out but were not quite sure what to expect. Our hope was that the baby's legs had grown and caught up to the rest of his body. While the technician was scanning, we realized that was not the case.
After the scan, the specialist came into the room right away to read the ultrasound and give us the results. As he looked over the baby, he explained that he believed our baby had a bone dysplasia. There are hundreds of types of bone dysplasia and he believed Otto had the most common of those - Achondroplasia.
Since Otto’s birth, we have had genetic testing done to confirm his diagnosis.
Achondroplasia is a bone growth disorder that affects the long bones of the arms and the legs. Those bones in particular do not grow as efficiently as ours do which leads to a shorter stature, or Dwarfism. There are different forms of dwarfism with different types of ‘looks’. Distinct features of dwarfism are shortened extremities and a large head.
Some Dwarfism types are recessive (carried within the parents’ genes); others are called “spontaneous mutations at conception”. Otto has the second type, and the likelihood of it happening to us is just as likely as it would be to happen to anyone. Over 80% of all people with Dwarfism have average-height parents, as in our case. This natural gene mutation is the oldest recorded. Only 1 in 25,000 children are born like this.
There are sometimes other medical considerations that vary greatly depending on the individual. After some initial tests that were done right after Otto was born, doctors said that he looks very healthy. As he continues to grow and change, doctors will continue to monitor him, and we will take on any challenges as they come as a family. Otto's intelligence is in no way affected by this condition
Dwarfism is not a disability or a reason to assume that Otto will be incapable. He will be able to do just about anything an average sized person can, just sometimes in a different way.
Dwarfism is not a disease that requires a “cure.” Most people with Dwarfism live normal lives…on average… they live better, more motivated and goal driven lives as they are seen to be natural go-getters.
Some terminology: the word ‘midget’ is not used anymore among most of the short statured community; it is seen as a derogatory, slang word. The term ‘little person’ or ‘having dwarfism’ is used if needed.
In the Dwarfism community the word “average” is used instead of the word "normal." Example: “Average sized parents” rather than “normal sized parents”.
We have had some time to process this information and want to make sure that you all understand that we are not sad or upset. We, in no way, want you to feel "sorry" for us, Otto, or Mae. No matter how tall he is or what he looks like, we absolutely love our little boy and are so thankful that he is a part of our family. We recognize that our #1 responsibility as parents will be to make sure he has the confidence to dream big and work towards whatever goals he sets for himself in life.
If you have questions, please let us know. We are still learning but will try to answer as best we can.
Love,
Matt, Julie, Mae and Otto
Special thanks to http://floydhenrymorley.com/ and http://www.dreambiglittleone.com/ for sharing their words and helping us explain Otto’s condition to all of you.
