Needless to say, Kylie has some pretty serious cardiac problems, usually a side effect of her Trisomy 18. She has a VSD and PDA (Ventricular Septal Defect and Patent Ductus Arteriosus). The cardiologist also told us that it would be near impossible to find someone to operate on her (we haven't decided if that is something that we wanted to do any way). He was amazed by Kylie though. He indicated that if he would have seen her at birth, he would have only given her 1-month to live. Here she is at 4 months and a miracle to everyone. John and I were wondering about comfort measures for Kylie. The cardiologist indicated that there are cardiac drugs that could do that for her, but would only prolong the end. I of course do not understand that!! Maybe it is just the heart of a mother screaming out what is wrong with my child being comfortable and living a little longer. What is so wrong with extra time as long as she is happy and comfortable??? John and I have not made the decision on giving her cardiac drugs. We will weigh options with her pediatrician and hospice. Side effects from these drugs may also outweigh their benefit too. The cardiologist will like to hear from us in a month and to let him know how Kylie is doing (I think he was captivated by her too). Kylie has had one blue episode since then. We thought we would make it a week without one, but we were only one day shy. We just pray that each day will be a good one and Kylie will continue to amaze us.
I just came across your blog. What a precious baby she is? When a doctor talks about prolonging I am furious. You see Annabel will be 5 yrs. in March and they still say well we wouldn't do this or that. They ask why would I want to prolong the inevitable. HELLO.... I just wanted to tell you that Annabel has what is considered a very large VSD, all her valves are affected and many other issues. I will pray for less blue episodes for your sweetie and that you find what you need in the way of help. WE too were on hospice but after about 5 mths. they didn't want us seeing specialist (I see whatever dr. I want to help her) so we discontinued the program knowing that if we needed they would be there. Prayers your way.
ReplyDeleteHello,
ReplyDeleteYour kylie Rose sure is beautiful.
Everyone makes different decisions for their baby and every baby is different. What is important is that parents get all the correct information on which to make best-interest decisions.
I am not sure if you know but there is a publication that states 91% success rate for cardiac surgery for trisomy 13/18. There are many moms on facebook (Trisomy 18 mommies) whose children have had successful cardiac surgery.
The parents decision is always the right one and I certainly don't mean to intrude or tell you what to do. Our 80 day old daughter (with tri 13) died as a result of information that was give to us that was not based on facts and we lament every day that we did not know that doctors can provide well-meaning but very biased information.
Best wishes to your lovely family.