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When Your Illness Dictates Your Family Size

I have a 4-year-old son and people are always asking when we will give him a sibling. Usually people can answer this pretty easily but things are more complicated when you live with a complicated chronic illness. Type 1 diabetes itself can present with an abundance of complications without being pregnant and birthing a child. But several months ago I was also diagnosed with fibrous dysplasia.

When it comes to diabetes your child may be in danger before even conceiving. You have to prepare your body for years to try to give your child the best shot. We are drilled with all the complications that can come with having type 1 diabetes. Making sure your blood sugars are in range and stable is the best bet, however you are not a pancreas and even if I ate the same thing every day, and did the exact same activities I still would not be perfect. To prepare I got on an insulin pump and also a continuous glucose monitor. These robot parts helped get my a1c (blood sugar three-month average) down but also came with skin rashes from the adhesives. I was blessed with a healthy baby boy. But even with all that control it really is just luck of the draw when it comes to health. He is at a higher risk of also developing type 1 diabetes. We participate in a clinical study that checks his antibodies and gives us some peace that he is not on the track to develop it. This is just the diabetes side of the conversation we have on whether or not we will expand our family.

Pregnancy was not fun for me. I did not glow. I puked. I puked every day, several times a day. I was worried. I basically lived at the doctor’s since the stillbirth rate is higher among diabetics. I was worried about his heart, about how big he was going to be, whether we would have a NICU stay (we did but only six days).

father, mother and young son

And now I have another diagnosis. Diabetes is not rare, but type 1 is not the majority, and physicians know more about diabetes. Fibrous dysplasia is rare. I talked to my endocrinologist this week and explained everything my orthopedic oncologist did. My endo’s exact words: “Hmmm that is so odd. I have never seen it presented this way before. I am going to have to research this.” This does not scream confidence. I have asked multiple questions throughout this whole process and I get told over and over that the doctors do not know. They can tell me what caused it, but they do not know why it was reactivated and started to cause pain. Many medical studies show that this is something that usually occurs in childhood, but I am 31. Studies also show that hormone changes can cause it to be reactivated. So if I were to get pregnant again would it come back? That is the question that no one can answer.

When people ask if we are going to have another kid I really do not know what to say. I just say “we have not decided.” Some people then claim that only children are spoiled and he needs a sibling. But, the truth is he may be an only child for all the complicated reasons above. And in all honesty it just sucks when your disease dictates your family’s decisions.

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