The day was bittersweet, as they determined that Paxton Eli has 2 rare congenital issues: Ebstein's Anomaly and a facial development condition called Pierre Robin's Sequence.
In persons with Ebstein's anomaly, their tricuspid valve in the heart, the one that separates the right ventricle and right atrium, doesn't work/isn't formed correctly. The tricuspid valve is made up of 3 flaps ("tri-cuspid"). In Ebstein's Anomaly one or two of the flaps may stick to the heart wall and cannot move. The flaps are often larger than normal. Sometimes two flaps are in the wrong position in the bottom heart chamber. The defects can cause blood to leak into the wrong areas of the heart. The backup of blood flow can lead to heart swelling and fluid buildup in the lungs or in the liver. Surgery is usually necessary to correct the anomaly.
In Pierre Robin's sequence, it's, as indicated, a sequence of events that results in development of a small mandible (micrognathia), that then results in posterior displacement or retraction of the tongue (glossoptosis), and ultimately upper airway obstruction. What usually results in the developmental process in utero at that point, is incomplete closure of the roof of the mouth (cleft palate). The babies experience difficulty with breathing and feeding.
Further testing has revealed no underlying chromosomal/genetic issue, which is wonderful news for future family endeavors, but Paxton Eli's path remains tough. He will undergo surgeries to address these issues.
Please check out Susie and Scott's website for their little "Padilla bug": www.padillabug.blogspot.com
I also read through their site this morning, and this touched me so much, I wanted to post it. I hope this helps those reading this understand what an amazing pair Scott and Susie are...posted on "Day 15, February 17, 2010", entitled "Fight for Your Life"....
"First and foremost, our hearts go out to any family that has a child with a disability or that has been diagnosed with a serious illness. It is not an easy thing to deal with. As a parent, you already worry about the well being of your child. If that child is also suffering from an illness or has a disability, then that worry increases tremendously. The most difficult part of it all is that they are truly innocent beings that just want to be loved. They do not understand what is going on and they do not deserve to go through something so awful. It is so difficult not to feel sorry for yourself or to feel alone in a situation like this. It is easy to become overwhelmed and to have a hard time understanding why this happened to you. It is easier to give up. It is easier to give in. It is easier to walk away and quit, but you can't. You have to find an inner strength that you never knew existed and move forward. Even though your patience and faith is continuously challenged along the way, you realize that you have been chosen to be the source of love and strength for this little miracle. You realize that it is not just about you, but something much larger. In the end, this incredible miracle of life has taught you something about yourself that you didn't know was ever there. They make you a better version of you and they give you the reason to continue to push through even when you think you can't."
(Scott and Susie)
2 comments:
Praying! :)
Thanks for your sweet words Alison and helping to get as many prayers adn support for my sister and her family as you can. We appreciate itd
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