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On April 11, 2016 at 9:48 am she came into this world without a peep, but she has the inner light and strength that her parents, family and doctors have never seen the likes before. Madison was diagnosed with Tetra of Fallot with Absent Pulmonary Valve , Bronchomalacia and DiGeorge Syndrome. Due to her heart condition and her physiology she has been on all kinds of ventilating systems to help her breathe . Madison has never been home to see her room, all her gifts and her two adorable fur siblings. Her home has been at the Children’s Hospital in Denver in the CICU. Her parents have and are on an emotional rollercoaster that they never imagined they would be on as first time parents, but they are so thankful for the gift that God has given them.
When Maddie was 3 weeks old she was slated to go home on oxygen, but the very next day it was determined that she would need heart surgery on May 9, the day after Mother’s Day. Her parents had very high hopes that this would solve her issues. She did wonderful in surgery, so wonderful that her surgery took less time than the doctors thought. After weeks of healing Maddie seemed to be doing good, then her breathing issues reared its ugly head. It has been four months of many up’s and down’s. She has gone through three cardiac and respitory arrest. And currently she still has small episodes where her stats go up and down and she essentially needs to have compressions to bring her heart back to baseline. The nursing staff and doctors work extremly hard to make sure she is comfortable and is stable. They do this through air clearance and heavy sedation. Her mother is lucky to see her big brown eyes only a couple times a day due to the heavy sedation.
After her third arrest the doctors brainstormed and implemented metal stents into her lungs to possibly help her breathe. Their efforts were successful to some extent. She still collapses her airways due to the severity of her Bronchomalacia and the compression from her enlarged Pulmonary Artery, and that is why her small episodes don’t turn into arrests. But these metal stents are very unpredictable, they can erode or move and that could be fatal for her. In the meantime, the brilliant doctors at Children’s Denver created a 3-d model of her airways and sent it to doctors and facilities to see if they have dealt with someone in her condition, which is very rare. University Michigan chimed in and said they may have a solution.
The plan is to air ambulance her to Mott’s children’s hospital. The engineers of University of Michigan have developed special stents that can be dissolved by the body with time. They differ from the metal stents in that they actually incase the airways, so it stops compression from the outside. This experimental surgery is not approved by the FDA , but they have allowed a small group of other children undergo this surgery. Two of the children that have had the surgery are happy and healthy and off ventilators. This is our hope for our Maddie, just to have a chance at a happy life and to be able to breathe.
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