Bailey’s Story

Site created on February 16, 2008

Bailey is 14 years old and has Septopreoptic Holoprosencephaly. Come learn more about Bailey and all the struggles we have had with him.. but also learn about how we have a lot of fun as a family..

Bailey was born at 36 weeks with a bilateral cleft lip and palate.  His cleft was of both the hard and soft palate as well.  He was a twin and at 14 weeks we went in for a ultra sound looked as if the baby had gastroschisis.  We were given 3 options.  1. To do nothing. 2. Let the babies grow to 24 weeks and then take them via emergency C-sections and then take the baby into an operating room to put the intestines back into the abdomen.  3. Selective reduce.  We went through a week of ultra sounds and watching the baby.  On Dec 14th 1998, it came baby that they were unable to find some of the babies organs, the baby had club feet and a huge cyst that went from the neck all the way down towards the feet.  

The doctors told us that in order to save "BAILEY'S life, we needed to selective reduce.  Taking all that information in , we did.   As of Today, Bailey has had 34 surgeries and has a very rare diagnosis.  We have great doctors who have doing wonderful things to help him.  Unfortunately, it has  taken us a while to find these wonderful doctors and the surgeries have added up with other doctors.  But we believe in God and believe that things happen for a reason.. Thank you for coming to our page... 

Newest Update

Journal entry by Michelle Jasperson

Bailey has been so amazing lately.  I went to an early IEP meeting today to find out that he goes into school making noises for the class.  I guess some days he's a dragon, some days he's a bear, and each day he comes in with a different sound.  His class has accepted it and they each guess who he's trying to be and then they all get back to work.  He's tends to find money every where around the school and it hasn't added up to much yet, but it will over time.  He's such a wonderful young man.  
Last night I was driving back from La Crosse WI from class and Bailey wanted to talk with me on the phone.  He was hurting and wanted to share with me where he was hurting and how he was hurting.  I was so impressed on how he was going through words to tell me where, when, how and why he was hurting.  He told me the bone on his jaw was hurting.  
I was woken today by his eyes and his eyes only.  He just laid next to me, looking into my eyes until I woke up. At first I thought it was a little weird, but once I woke up and figured out who was really 2 inches away from my eyes, well I totally understood.   Bailey told me his jaw hurt again and I checked it out.  His entire right side of his face is swollen and we took him in today.  They have placed him on antibiotics  along with pain medication.  The doctor we saw is not sure of what is going on with his mouth and cheek, but she said that we needed to make an appointment with our team in the Cities as soon as we can. She also has ordered a CT scan for Bailey which is set for tomorrow, Thursday at 7:00 a.m.  What worries me the most is this is happening on the side where the blood vein was weaved under the skin to the top of the bone graph. My mind has just gone from one place to another on the possibilities, and yet Bailey's mind has even gone from one bad thing to another.  He asked if he was going to have to have another surgery for this.  I told him we didn't know and that it was important for us to find out what was wrong first.  So I am just waiting to hear from our doctor and how he would like us to proceed after we have the CT scan done tomorrow.  until then, I am praying for nothing major.....

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