Julian was diagnosed with Down syndrome at birth. 50% of all children with Down syndrome have significant heart defects that require surgery. Julian is one of them.
The medical condition Julian has is called a transitional AVSD (Atrioventricular septal defect). This means that he has a hole between his atria and a hole between his ventricles.
The term “transitional” means that the valves at the center of his heart aren’t quite fully formed. When his heart was developing the valves didn’t quite close. This also needs to be repaired.
Many babies with Down syndrome have to have immediate surgery when they are only days old. Julian’s could wait until now because he had good blood oxygenation levels (95% when he was born and now 99-100%) and the holes in his heart aren’t greatly affecting his daily life (eating, breathing, exerting energy, etc.). However even though the holes aren’t very large, during our last check up Dr. David Fulton our cardiologist at Children’s Hospital told us one side of his heart is beginning to enlarge because it is working extra hard to move the blood. Julian’s surgeon will be Dr. Sitaram Emani.
So, those are the details. We are getting nervous about the surgery but have faith in the well trained doctors at Children’s. We have talked with other families who have gone through this to try to prepare ourselves but I don’t think anything can really prepare you.
Gretchen and Tom,
I just want you to know that I will be right here with you on January 4th. My thoughts have been with you constantly, and I am praying for your little guy! You and Tom are excellent parents, and I can see that Julian is a very happy baby. He is surrounded by so much love from you, Tom, both sets of grandparents, other relatives, and all your friends. I feel confident that little Julian’s heart surgery will be very successful. Please keep us updated. May 2011 be a wonderful year for the Sherman-Mather family!
Thanks for starting this blog! I will appreciate the updates in a few days. Your family is constantly in my thoughts and prayers. Stay strong…
Our thoughts and prayers are with you all during this time. Julian is lucky to have you guys as parents. I can only imagine how nervous you all are right now, but I’m sure he will do great and 2011 will be a wonderful year for you.
Much Love – Scott/Kory and Ava
Thinking of you and your family and that sweet, strong boy on this New Years Day. Sending love and love and love.
We send you love, hugs, and a gentle kiss of support…
Hi Gretchen and Tom and Julian,
We are wishing for a smooth tomorrow as you enter hospital, and we hope you meet a lot of health professionals who you think are not only really good at what they are doing but who are kind as well. We can only imagine how nerve racking this all is, but hang in there and find moments to be proud of your little boy, who will fight his way through every day. We will pray that the surgeon will be extra pleased with his work.
With love to you, all three, and a big kiss to Julian as he gets started on this surgery journey, and hugs to both of you,
thank you for the blog,
Susanna and John, and Graham and Malcolm, Naomi and Sophia
Comments from Facebook:
Kyle Clayton Best wishes to you all this year!
December 31, 2010 at 8:25pm · Like
Lindsey Turner Lukis G & T – We’ll be thinking of the three of you in the coming days…just remember, while this is something you’ll hopefully only go through once, the doctors have done this many times. Julian is in wonderful hands; we hope everything goes smoothly!
December 31, 2010 at 8:40pm · Like
Erica Crane Wright Good luck. Sounds like you guys are in great hands! Will be thinking of you guys next week.
December 31, 2010 at 9:45pm · Like
Cyndy Falwell Pitta We’ll send you guys our thoughts, prayers and positive vibes now and on the day of the surgery. Please let us know if there is anything we can do for you! I’m sure everything will go great! Love to you all!
December 31, 2010 at 9:46pm · Like
Hope Canter Noar I will be with you on January 4th! You are both excellent parents, and have given Julian a wonderful start! He is a very happy baby, and I am confident that the surgery will go well! Please keep us updated! Love to both of you—Tom and Gretchen!
December 31, 2010 at 10:21pm · Like
Pingback: Julian Thomas: A Birth Story | Julian's Journey – Life As We Know It
Hey there! I just want to give you a big thumbs up for the excellent
information you’ve got right here on this post. I will be coming back to your website for more soon.
Thanks a lot for sharing this with all of us you actually recognise what
you are speaking approximately! Bookmarked. Kindly also discuss with my web site =).
We will have a hyperlink alternate agreement among us
Thanks for sharing your thoughts. I truly appreciate your efforts and I am waiting
for your next write ups thanks once again.