Hello friends –
Our daughter Miriam will be undergoing major surgery January 28 to separate her congenitally fused ribs and begin treatment for her scoliosis. As you probably already know, she was diagnosed in utero with hydrocephalus and possibly holoprosencephaly, but she was born with only enlarged (but functioning) ventricles and missing a few centerline brain structures. You can read more about her miraculously healthy birth on Be Not Afraid.
After she was born, we learned that she has a condition called Thoracic Insufficiency Syndrome wherein the malformations of her chest wall have prevented her lungs from growing. Her lungs have actually decreased in size since she was about 2 years old. She is thankfully in excellent health for the time being, but this condition could at any time start to impair her breathing and likely shorten her life. Her doctors will be inserting two VEPTR (Vertical Expandable Prosthetic Titanium Rib) devices which will slowly push her ribs apart and allow her spine to continue to grow, hopefully correcting the scoliosis without requiring fusion in adolescence. The Children’s Hospital of Philadelphia has an excellent series of videos on youtube explaining the procedure if you would like to learn more about it.
After the surgery on January 28, she will spend 5 – 7 days at Dell Children’s Hospital here in Austin and then recover at home. Barring any complications, her doctor says she should return to a near-normal routine in two weeks or so, and be fully recovered in six. She will need smaller follow-up surgeries every six months until she stops growing in order to expand the device to keep it on pace with her bodily development.
We are writing because many people have asked what they can do to help our family through this time. First of all, we would love if you could send cards and words of encouragement and prayer to Miriam. She loves to receive mail and it would be a joy to bring her a pile of cards to open in the hospital. Her fourth birthday is January 11, so belated birthday cards would also be a happy surprise. If possible, please include a picture of yourself and your family so she can see who is thinking of her. We would like to make a scrapbook for her to take on future hospital visits to remind her of all the people who love her.
If you need our address, please send us a private message or email.
We are very blessed that Jason has a secure job with good health insurance. Our out-of-pocket expenses are capped each year, and we know that eventually we will pay off our bills for Miriam’s procedures. However, we know some of you might like to contribute toward these costs, as well as the costs of meals, transportation, babysitting, and the like. If so, please visit http://www.youcaring.com/medical-fundraiser/Miso-s-VEPTR/38121 to make a donation and feel free to share this link.
Finally, and most importantly, we ask you to pray for Miriam on January 28 and the days following. She will be in good hands, but even in the best situations complications can arise. We ask to you to pray for protection from accident, infection, and emotional scarring. We pray that we are doing the right thing for her in the long run, and that this procedure will give her many years of healthy growth and life that she might otherwise lose.
Thank you so much for caring for our family. We are blessed to have all of you in our lives. We will keep you updated with Miriam’s progress. God bless you.
Jason & Becky Haskins
on the Feast of the Holy Family 2012