Meet baby Taisiya...She is almost 1. 5 years old. In January of 2015 at just 3 months old, the doctors discovered that Taisiya has congenital heart disease, coarctation of the aorta. They also discovered numerous holes in her heart tissue.
It was an emergency case and Taisiya was operated on within a few days, a band was inserted and the pressure was normalized. The surgery was successful and she was transferred from Intensive Care. A few weeks passed before the doctors realized that during the surgery they damaged the nerve that is responsible for the movement of the left part of the diaphragm, it did not let the left lung expand. In addition, during the intubation procedure (a connection to the breathing machine during the surgery) her vocal cords were damaged, leading to temporary voice loss.
In February of 2015 she needed to have a second surgery where doctors inserted the diaphragm lower. But then a new problem arose; as Taisiya grew rapidly, the band began to press and it was necessary to do a new surgery to insert a new band.
Just when they thought everything was fine, Taisiya's diaphragm rose again, blocking the lungs. A fourth surgery was necessary. Finally, a small victory, the doctors were satisfied with the band, and the overall work of the heart. Taisiya was breathing with the help of the ventilator, through a mask that delivers oxygen under pressure into the lungs, expanding them.
Taisiya was finally doing a bit better and was moved to a regular ward, but under the surveillance of a group of nurses.
Unfortunately, the mask therapy did not make any progress. The doctors decided that Taisiya has the rare genetic disease (Pompe disease) where the muscles don't develop as they should, hence the breathing problems. They send blood for genetic analysis. Since it is a long process, waiting until a certain amount of material to run the equipment, the doctors offered to do a biopsy of muscle tissue so that they would be able to check their other hypotheses.
The genetic test was negative. So doctors began to lean toward the opinion that muscle weakness is most likely caused by the long stay in the hospital. All this time she was breathing with the support of masks, without the support she gasps. The mask is a short-term solution, it is difficult to grow, to play, it spoils the skin, eyes, constant flow of air. Doctors offered a long-term option — a tracheotomy. A surgical procedure which consists of making an incision on the anterior aspect of the neck and opening a direct airway through an incision in the trachea. Tracheotomy is put on a year, maybe two, depending on a child. A baby with tracheotomy is able to play, to sit, to live. It is possible that the device will have to connect only at night and during the day Taisiya will be able to do without it. Taisiya had a tracheotomy on July 2nd, 2015.
HOW YOU CAN HELP :)!!!
Taisiya is doing much better now, as she grows, and develops her skills. Her parents are trained to care for her but they need hep and support from their family as they are recent immigrants to Canada from Russia and have a 3.5 year old toddler. They initially made the move to Winnipeg but now reside in Edmonton as all of Taisiya's surgeries have been in Edmonton, and this has been a strain. The amount of $3000 would go towards buying Taisiya's grandmother a plane ticket so that she could assist with Taisiya's care as well help cover some of the fees associated with having to break a lease agreement in order to move to a home with a room for all of Taisiya's medical equipment.
Thank you for reading and please forward to your friends and family if her story has touched your heart like it touched mine. I will update you on Taisiya's progress in a few months.
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