Hello everyone,
Dan and I would like to thank everyone for the support and prayers that we have received so far. We wanted to keep everyone updated on our situation. For those of you who haven’t heard, our life has taken a dramatic turn in the past 24 hours.
Our ultrasound on Thursday showed some abnormalities in Owen’s growth. Owen’s arms, legs and chest cavity were measuring smaller than they should have been at this stage in our pregnancy. We were referred to a perinatal specialist right inside the hospital who did another ultrasound. Owen was diagnosed with skeletal dysplasia. His head and abdomen are of a normal size but his limbs and chest cavity are smaller than they should be. In simple terms, half of his body was growing normally and the other half was not. The specialist told us that the diagnosis is lethal and Owen would most likely not live past a few hours. As you can imagine, our world came crashing down around us.
Because of the severity of the situation, the specialist referred us to U of M hospital because of their expertise in these sorts of prenatal abnormalities. We spent all day today at U of M verifying our situation and trying to understand what it means. They confirmed that Owen has skeletal dysplasia and that his little life will be short. Skeletal dysplasia is a genetic disease that has many different forms (they will know better after the birth what specific form he has). In Owen’s case, the size of his chest cavity did not allow his lungs to develop normally. In the womb, he doesn’t need his lungs to survive but once he is born they will not have the capacity to support his breathing for an extended period of time. As far as the doctors can tell, his lungs are not developed enough to support his body even with the help of a ventilator. From what we were told, skeletal dysplasia is a condition that was determined at conception and was not caused, nor could it have been prevented or fixed throughout the past 9 months. Basically, we hit the bad luck lottery.
We have scheduled a Caesarean section on Tuesday at U of M and we will need everyone’s support and prayers to get us through the rough road that lies ahead. Dan and I are obviously completely shattered by this unpredictable chain of events. We are however, thankful for the small blessings. The doctors are optimistic that Owen will live for at least few hours. We are thankful that we will get the chance to give him a lifetime of love in those few hours. We are thankful that he has not been in any pain up to this point. We are thankful that we did not find out until late in the pregnancy so that we were able to enjoy the entire experience of the miracle of life. We are thankful for all of prayers, support and love of our family and friends. We are thankful that we have each other.
I know that no one really knows what to do or say. Neither of us would know what to say to someone in this same situation. To be honest, at this point, we are really not sure what we need to hear besides “We are here for you”. As bad as it is now, we have some really tough times ahead. I know everyone is curious about what is happening and it’s actually cathartic to write about it so I will try to keep the updates coming. Thank you so much for the anticipated support.
Sincerely,
Cat and Dan
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