Story by Sarah Savickas. Read more from Sarah here.

When you already have four beautiful and healthy children, you never think that when you are expecting your fifth child that anything could go wrong. The feeling in your stomach when you are told something is wrong with your baby is indescribable. You are thrown into the world of the unknown and for me, it was being put into a cold and empty conference room waiting for answers after an ultrasound at the maternal fetal medicine specialists office after my OB detected abnormalities on the ultrasound at 15 weeks.

Instead of hearing, “It’s a boy”, we heard that we are having a little boy who will most likely not take his first breath. We never gave up on our son and I told myself I would fight with my son as long as he is willing to fight; and here we are, 4 years later.

Oakley’s diagnosis of Prune Belly Syndrome was confirmed at birth. Oakley never stops smiling no matter what he is faced with and his life has consisted of numerous tests and surgeries. Prune belly syndrome mainly effects the kidneys, bladder and urological system so Oakley is catheterized through a channel in his belly button called a Mitrofanoff to empty his bladder and try to relieve some of the swelling of the kidneys, as he also has kidney disease, which stems from the blockage he suffered in utero.

Considering that 1 in 40,000 are diagnosed with prune belly syndrome, we have been blessed with an amazing team of doctors and have met so many people we wouldn’t have ever come into contact with otherwise. My son will live with prune belly syndrome for his whole life. There is no cure, only treatment. Medicines, tests, surgeries, catheterization and invasive procedures will be a part of his life forever. Though it hurts me as a Mom to know this, we took his diagnosis from a negative into a positive to give back and help others as much as possible and that really helps us to alleviate some of the daily stresses.

My advice to anyone who has a child with a life threatening disease would be to allow yourself time to grieve. It is okay to cry and get mad! If you are being told at diagnosis that your child will die or they are offering you an abortion, it is your right to a second or third opinion. Don’t stop until you find a team that you are comfortable with. Join or start up an online support group. If you feel alone, search online for others who may be dealing with your child’s diagnosis already who can offer words of wisdom. Never feel alone. Don’t be afraid to ask for help. Lastly, when your child is diagnosed, so is the whole family. Never feel like you aren’t doing enough, because you are.

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