Breanna was born on a warm sunny morning. Her birth was fast and furious and what many would consider to be easy. Although she was five weeks early she came out yelling and squirming, and absolutely perfect in every way other than being tiny because she was premature. In fact she was so healthy and perfect that she was discharged from the hospital at just 24 hours old.
When Breanna was two days old her doctor's office called and said that the lab messed up a test that was done on Breanna and so we needed to take her back to the hospital to have the test redone, so that day we went in and sat and waited. When it came time to doing the test they took Breanna from my arms and took her to another room. My heart ached that I wasn't allowed to go back with my baby and hold her while they performed the test. They brought her back to me within minutes and she was fussing and completely unhappy. I decided to nurse her in the waiting room before heading home and she very quickly calmed down and settled in. We went home, not thinking anything more about the test until a few days later. That was when the dreaded phone call came. The doctor's office called and told me to stay on the phone because the doctor needed to talk with me about something very important that they found out about Breanna. I stood there in complete terror not knowing what could be wrong. As I stood there waiting my sister came into my house for a visit so I handed her the baby, and at that moment the doctor came on the phone. He told me that Breanna had a rare genetic disorder and he knew nothing about it, but the specialist was waiting for my phone call. I tried to ask him questions and all I got from him was that she had something called PKU and he had never heard of it before other than when he was in medical school.
I instantly felt like my world had ended. I felt the room crashing in. I was shaking and nervous as I dialed the phone number for the specialist at Children's Hospital. I fully expected to hear a secretary answer, but instead the doctor answered the phone and told me how she was so glad I called and that she was waiting for my call. She had a kind and gentle voice, and sounded like an older woman. She told met hat my baby tested positive for a rare genetic disorder called PKU, and then asked me if I was breastfeeding. I told her i was and she told me to only breastfeed and to not give her infant formula and then said she would see me on Tuesday (this was a Friday afternoon). I had so many questions, but she kept assuring me that she would explain everything when we met. I was terrified and numb. I ran to the back porch of my house and yelled for my husband who was in the yard gardening. I told him to come right away and that something was wrong with Breanna. As he walked up the stairs he told me he knew and she would be fine. I was confused and couldn't figure out how he could be so calm and how did he know. I didn't even know what it was. He explained to me that when they called to repeat the test he knew that the test wasn't really lost, but that she tested positive for the disorder (he worked in a hospital lab, so that is how he knew). I was instantly mad and angry at him for not warning me....for not preparing me for what was to come. Looking back now I am sure he was just as shocked and upset and that would explain why he was so quiet from the day of the call for the retest until that day. It was because he knew and he was working on processing what was happening.
That weekend I ran to the public library to see what i could find on PKU (remember this was before the internet, so all we had was the card catalog and paper books). I found one book on PKU and I quickly checked it out of the library and read the entire book as quickly as I could. As I read I was mortified and terrified and so upset because this book was all about a person with PKU who was so affected by the results of not being on diet that she was institutionalized. All I kept thinking is that can't happen to my baby. I remember holding her and feeding her and thinking how absolutely perfect she looked and I couldn't grasp how anything could be wrong with her.
Tuesday finally came and we packed up all three kids and headed to Children's Hospital in Milwaukee. It felt like forever as we waited to be seen by the doctor, and when she came in she was a sweet, grandmotherly type woman with kind eyes. She assured us everything would be okay and she snuggled my new baby and talked to my two toddlers with such kindness. Before we left we knew a little bit about PKU, were given a special formula to feed our baby and were told to stop breastfeeding immediately and were taught how to prepare the formula. We were also told that we would get more information as Breanna grew but this was all we needed to know for now and rest assured she will be fine.
All I kept thinking is how will she be fine? I saw all these children in this clinic...some looked fine and some didn't (I later learned that not all of them had PKU). We were told to go home, care for our baby, take care of ourselves and were instructed to bring the baby back for more blood tests. I was so upset because I am a here and now kind of person....I want all details at once and all my questions answered at once. I didn't want to learn as we went. I needed to know how she was going to be right now!!!!
I won't lie...I felt like I was in fog for almost the first year of her life. With each new transition I felt scared and unsure. I didn't know how to feed my baby, and honestly that led to a deep depression (looking back it would now be considered postpartum depression, but back then there was no such diagnosis).
Of course now, 23 1/2 yrs later Breanna is bright and beautiful and energetic and more than a mother could ever have expected. She is exactly like everyone else, and PKU is just a small part of her genetic make up. Other than that she is perfect in every way!!!!!
When Breanna was two days old her doctor's office called and said that the lab messed up a test that was done on Breanna and so we needed to take her back to the hospital to have the test redone, so that day we went in and sat and waited. When it came time to doing the test they took Breanna from my arms and took her to another room. My heart ached that I wasn't allowed to go back with my baby and hold her while they performed the test. They brought her back to me within minutes and she was fussing and completely unhappy. I decided to nurse her in the waiting room before heading home and she very quickly calmed down and settled in. We went home, not thinking anything more about the test until a few days later. That was when the dreaded phone call came. The doctor's office called and told me to stay on the phone because the doctor needed to talk with me about something very important that they found out about Breanna. I stood there in complete terror not knowing what could be wrong. As I stood there waiting my sister came into my house for a visit so I handed her the baby, and at that moment the doctor came on the phone. He told me that Breanna had a rare genetic disorder and he knew nothing about it, but the specialist was waiting for my phone call. I tried to ask him questions and all I got from him was that she had something called PKU and he had never heard of it before other than when he was in medical school.
I instantly felt like my world had ended. I felt the room crashing in. I was shaking and nervous as I dialed the phone number for the specialist at Children's Hospital. I fully expected to hear a secretary answer, but instead the doctor answered the phone and told me how she was so glad I called and that she was waiting for my call. She had a kind and gentle voice, and sounded like an older woman. She told met hat my baby tested positive for a rare genetic disorder called PKU, and then asked me if I was breastfeeding. I told her i was and she told me to only breastfeed and to not give her infant formula and then said she would see me on Tuesday (this was a Friday afternoon). I had so many questions, but she kept assuring me that she would explain everything when we met. I was terrified and numb. I ran to the back porch of my house and yelled for my husband who was in the yard gardening. I told him to come right away and that something was wrong with Breanna. As he walked up the stairs he told me he knew and she would be fine. I was confused and couldn't figure out how he could be so calm and how did he know. I didn't even know what it was. He explained to me that when they called to repeat the test he knew that the test wasn't really lost, but that she tested positive for the disorder (he worked in a hospital lab, so that is how he knew). I was instantly mad and angry at him for not warning me....for not preparing me for what was to come. Looking back now I am sure he was just as shocked and upset and that would explain why he was so quiet from the day of the call for the retest until that day. It was because he knew and he was working on processing what was happening.
That weekend I ran to the public library to see what i could find on PKU (remember this was before the internet, so all we had was the card catalog and paper books). I found one book on PKU and I quickly checked it out of the library and read the entire book as quickly as I could. As I read I was mortified and terrified and so upset because this book was all about a person with PKU who was so affected by the results of not being on diet that she was institutionalized. All I kept thinking is that can't happen to my baby. I remember holding her and feeding her and thinking how absolutely perfect she looked and I couldn't grasp how anything could be wrong with her.
Tuesday finally came and we packed up all three kids and headed to Children's Hospital in Milwaukee. It felt like forever as we waited to be seen by the doctor, and when she came in she was a sweet, grandmotherly type woman with kind eyes. She assured us everything would be okay and she snuggled my new baby and talked to my two toddlers with such kindness. Before we left we knew a little bit about PKU, were given a special formula to feed our baby and were told to stop breastfeeding immediately and were taught how to prepare the formula. We were also told that we would get more information as Breanna grew but this was all we needed to know for now and rest assured she will be fine.
All I kept thinking is how will she be fine? I saw all these children in this clinic...some looked fine and some didn't (I later learned that not all of them had PKU). We were told to go home, care for our baby, take care of ourselves and were instructed to bring the baby back for more blood tests. I was so upset because I am a here and now kind of person....I want all details at once and all my questions answered at once. I didn't want to learn as we went. I needed to know how she was going to be right now!!!!
I won't lie...I felt like I was in fog for almost the first year of her life. With each new transition I felt scared and unsure. I didn't know how to feed my baby, and honestly that led to a deep depression (looking back it would now be considered postpartum depression, but back then there was no such diagnosis).
Of course now, 23 1/2 yrs later Breanna is bright and beautiful and energetic and more than a mother could ever have expected. She is exactly like everyone else, and PKU is just a small part of her genetic make up. Other than that she is perfect in every way!!!!!
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