Daniel, approaching age 2, is our tiny little hero with Holt-Oram Syndrome. He is a darling little boy who loves to play with tools, just like his dad, Jacob, whom also has Holt-Oram syndrome.
At just 20 weeks gestation, Lydia and Jacob went to an ultrasound checkup, and discovered Daniel would have a missing thumb. After some confusion among the staff and discussions with the radiologist, they determined he would also have short arms, and seven fingers. However, this was not a surprise. Daniel’s parents were aware of the genetic probability of Holt-Oram, and after 5 failed pregnancies, they were not at all saddened by this news. The doctor also had concerns for Daniel’s heart. People with HOS, also have holes in their hearts in-utero. We are all born with holes in our hearts initially, but during the first two days after birth, as we learn to breathe, the hole closes properly. For Daniel, this was not the case. At seven days old, the doctors determined the hole had not closed, and in fact was quite large. He had an ASD and VSD hole in his heart. His VSD repaired itself, however, his ASD was repaired. Meanwhile, his poor mother would see her sweet baby turning purple, go into heart failure, among other struggles with the HOS itself.
Daniel also had a rod placed in his arm, to help extend his forearm and literally separating his wrist so it could grow. His parents would have to crank the fixator rod in his arm to expand and stretch his wrist! Four times a day! Turning the bar created subtle changes, much like tightening braces, except in reverse. Poor Daniel would scream in pain, then snuggle with his momma for comfort.
HOS has a variety of severity. Daniel’s father is moderate. He is married, has two children and works as a handy man. Daniel is more severe. Holt’s syndrome is manageable but challenging. His father has brought a great understanding to their family, as well as others, showing and teaching them that he can do many things, including being a handyman, with short arms and eight fingers. Daniel’s parents understand that he will have challenges, but they also have hope for a great future!
Daniel is anything but broken! He is strong! Resilient! A curious little explorer! It is hard for his parents to watch him be in pain, go through various surgeries. What hurts more, is watching others treat him differently. His parents want others to know that Daniel should not be treated differently. They want him to explore, learn independence and fight his own battles, just like everyone else!
Daniel has an older sister, Jess. Their parents make a special effort to give attention to her, because it can be tricky balancing the health of Daniel, and giving Jess the same attention and affection. She loves her brother! Their relationship has its normal and expected challenges, as well as a few more.
Tiny little heroes have BIG HEROES for parents!
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