I can still remember over 29 yrs ago standing in my dining room taking a phone call from my baby’s doctor. I vividly remember him telling me “your baby has a rare genetic disorder called PKU, and I don’t know anything about it. The geneticist is waiting for you to give her a call.” I stood there in shock, shaking with fear, absolutely terrified. I remember looking down at my absolutely perfect baby thinking “how could this be?” I felt like I was in a dream in that moment, and ran outside by my husband. He was tending to our garden and I stood on the porch yelling for him and crying hysterically. He looked up from what he was doing, and simply said “I know.” I couldn’t understand how he knew, and couldn’t understand why he wasn’t freaking out the way I was. Later, when we talked about it he said he knew she had PKU because they never call for repeat tests, and a few days earlier they called me and told me that Breanna’s test was messed up and needed to be repeated. At the time I didn’t think anything of it, and took her to the hospital to have the test repeated, but because my husband worked in a hospital lab he immediately knew what that meant, but didn’t tell me anything.
I went inside and called the geneticist. She was a sweet woman who kept telling me it would be okay. She asked me if I was breastfeeding or feeding formula. W hen I told her breastfeeding she told me to not stop because at this point breastmilk was better for her than regular formulas. I had no clue what all of this meant, and all I knew was that I had to take Breanna to the clinic to be seen four days later (she was nine days old when we went to the clinic).
That weekend I went to the library and found the only book I could find on PKU. Remember this was before computers, and it was at a time when you used the card catalog....I took this book home and read it that weekend. It was so sad, so depressing, and made me even more stressed out. The book was about a late diagnosed person (born before testing was done), and how she had to be institutionalized. My heart was broken, and my world was turned upside down. Many times that weekend I felt like I was being smothered.....like I couldn’t breathe. I kept telling myself to wake up from this horrible dream, and I was so devastated. It was hard caring for Breanna and her two older siblings because all I could do was cry.
Four days later we drove to the clinic, and we were greeted by a very sweet, older woman who scooped my beautiful baby up in her arms, hugged her and planted a kiss on her forehead and told us how absolutely perfect she was. She explained a little bit about what PKU was, and told me I would have to immediately wean and start feeding my baby this special formula. I was so devastated because I struggled to breastfeed with my first two, and this was the first baby that took to the breast easily (at the time, and at that clinic they didn’t let mom’s breastfeed and told them they needed to feed only formula.....years alter I was able to breastfeed my two other girls who had PKU).
I can remember going home....still feeling like I was in a fog. I made this formula that they gave me, and I can remember thinking it was the worst smelling thing I had ever smelled (thankfully today formulas are much better). It smelled like rotten potatoes, but thankfully my baby gobbled it right down.
For months after my daughter was born I was so afraid of what the future would bring. I kept asking what her life would be like every single time we went to the PKU clinic, and they would tell me that they would teach me what I needed to know as we went along. Anyone who knows me knows that this isn’t okay with me. I like to know what the future might bring. I wanted to know what life would be like when we started feeding solids. I wanted to know what life would be like when she was a toddler and started to eat table foods. I wanted to know what life would be like when she started school, or started dating, or got married and wanted kids. No matter how much I asked I was continually told I would learn when the time came.
I spend the entire first year of my daughter’s life sad and scared, and worried I would screw something up and damage her. I focused all of my energy on what I would feed my baby, and then when I got out and met other families I heard stories of how their kids refused formula or rebelled and then I got really scared. I continued to listen to what the clinic advised. When they said take away the bottle, or remove the sippy cup, or switch her formula cold turkey I did it because I didn’t want to screw anything up. One thing I learned is that sometimes medical professionals will give advice that just might not work for my family, and that is when you talk about alternatives and options.
I will admit Breanna went through a period of time when she rebelled and didn’t like her formula. I know it was because we switched her formula cold turkey, and the new formula tasted nothing like the old one and that was hard. I learned from that experience to transition from one formula to another slowly by slowly replacing one with the other. I also learned that sometimes drinking from a bottle or sippy cup for a little bit longer isn’t that bad because reality is the child will not go to college with a bottle.
Thankfully I was able to take what I learned and perfect life with PKU. By the time I had my second child with PKU (she was my 6th child) I knew to ask more questions. I knew to tell the medical staff when something wasn’t right for my family, and to ask for alternatives. I learned to use my mommy instincts and to treat them no differently than I did their siblings, and life with my next two who have PKU was amazing. They never refused their formula, and never ate foods they weren’t allowed to have.
Today I very rarely think about PKU unless I am planning a meal, or trying to adapt a recipe. My girls are amazing and brilliant individuals who are all on diet, and all doing really well. I am very grateful that all three of my girls have a positive attitude and outlook on life. All three are well adjusted, drink their formula, follow their diets, and make me so proud.
So my advice to new parents is to follow your instincts, don’t make everything in life be about PKU, find ways to adapt recipes so your kids with PKU can eat similar foods as the rest of the family, treat all of your kids the same (with and without PKU), and have a positive attitude because your kids will feed off of your emotions. If you hate PKU, they will too.
At the time this blog was written, my daughters are 29 yrs old, 21 yrs old, and 12 yrs old.
About the author: Michelle currently lives in Wisconsin, and is the mother to 9 children (3 with PKU), and she is a grandmother. If you would like to contact Michelle you can email her at michelle.d.hardy@gmail.com
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