Flint has Heterotaxy Syndrome while heterotaxy is not the result of is heart defects it almost always causes them, his heterotaxy has caused the following heart defects; dextrocardia, double outlet right ventricle, pulmonary valve stenosis, common atrium,supracardiac total anomalous pulmonary venous return, and complete AV canal. This has led to a complicated congenital heart defect along with malrotation of the intestines and his stomach located on the opposite side of his body instead of the regular placement.
I found out about my sons complicated heart after our 20 week ultrasound in may of 2018. This broke my heart into many pieces. Flint has been located at Children's hospital in Minneapolis since the day he was born on 10/1/2018. Flint has been so strong and has had two surgeries as of now on his heart called a BT Shunt and a glenn shunt. Flint Has been on Ecmo twice now once for 5 days then again for 6 weeks due to some complications with his lungs leading to being damaged and creating holes that needed to heal. Flint has had a tracheostomy to help with breathing support which he is currently getting through a ventilator. We have tried to move to the home vent however due to more complications with his heart, it has not been possible. Flint also had a GJ tube place as well as his LADD procedure which straightened his malrotation out. Since Coming off Ecmo Flint has developed large amounts of Ascites (fluid build up around the abdomen). This fluid build up then puts pressure on his internal organs making it hard to breathe, urinate, and feed.
This has lead to more developmental delays. We are currently working on sitting up, reaching for toys, and have started learning signs. This will help him learn to communicate, we hope that the Pt,Ot, and Speech will help Flint to learn and grow.
We have now spent 400 days in the hospital, 2 Holloweens, going on two Christmas, And our first Birthday was spent here as well. The Hospital staff do an amazing job making it feel less sterile and more like home. We Just celebrated his first birthday. But through all this he has been a worrier and the happiest of babies. As of right now there is no end in sight to this long journey sadly. We are waiting to hear from other hospitals in the hopes that they may have feedback of other treatments we can try. Flint has lived in this hospital his whole life.
Flints Father and I try to see him as much as possible but sometimes this is hard we live over two hours away.We both have to work in order to pay our bills and keep up with everything, and as of recently we are down a car due to traveling induced damage to our vehicle. Before this we were able to have one of us there with him 3-4 days a week. As of now we are down to two days to see him. If we can reach our goal my dream would be to take unpaid leave from work and try to stay with flint until we run out of funds as well as catch up on our bills. We miss our little boy everyday that we are not with him.