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I could write a book about the emotions I have experienced since my 11 month-old son Dylan, was diagnosed with PKU. Dylan was born on Sunday October 19, 1997 at 1 AM. I have never experienced the type of joy and love that I did when they gave me this little bundle to hold. He was all mine! I flew through the delivery with minimal pain, and only pushed three times and he was here. I started breast feeding immediately and Dylan latched on right away. Nurses even wanted to video him and use the video to teach proper technique for breastfeeding. Everything went so smoothly.
I use to think to myself – gee, am I ever lucky to have had such an uneventful delivery AND the most beautiful baby. My husband said he couldn’t believe how lucky we were. I kept thinking something was going to go wrong since I couldn’t be this lucky. Then, on the day of discharge, I was informed by the pediatrician that Dylan was slightly jaundiced and would have to stay for phototherapy. I was so upset a) because daddy wanted us home and was so lonesome for us and b) I hated to see Dylan left alone in the incubator with his eyes all covered up so he couldn’t see me. I would take him myself to the nursery to put him in the incubator and gently put the covers on his eyes and talk to him so he wouldn’t be scared. The nurses thought I was over-reacting but I had been rooming in and we were so attached. He never cried if I did it and would always cry when the nurses did it. He knew. Finally his jaundice went away and we were discharged home on Thursday. My husband couldn’t take any time off so we (Dylan and I ) were on our own and managing just fine.
Then on Monday morning Dylan woke up early. We were supposed to go down to see the pediatrician for his 1 week follow-up, but I called and cancelled due to the terrible weather. One hour later I got a message from the pediatrician’s office to phone the office as soon as possible. When I returned the call the pediatrician told me that he had just received some abnormal blood results back on Dylan. I ran to shut off the radio and get a pen so I could write down what he was saying. I had never heard of Phenylketonuria before and I’m a nurse. I immediately thought the worst--that Dylan was going to die. The doctor then told me that he had booked an appointment with a specialist at the Children’s hospital for that early afternoon. Now, I was sure that I was going to lose him. I remember the Dr. saying something about following a diet and if treatment started early ... and was wondering what he was talking about. What did diet have to do with abnormal blood results. I must have heard him wrong. After we spoke, I hung up. I was crying, hyperventilating, and saying "please God, this can’t be happening to me. Please don’t take my baby away from me."
I quickly called my husband at work but he was off-site and I had to get my father-in-law to locate him. My father-in-law knew something was wrong and asked if everything was all right. I remembered saying " no, everything is not all right." My husband had an hours' drive home and the weather was terrible with weather warnings out to stay off the roads if at all possible. I suggested I meet him in the city since there was no way he could drive all the way home and back to the city and make it on time for the appointment with the specialist. He made it home in 20 minutes! We both cried on the way to the hospital, thinking the worst. I sat beside Dylan all the way and prayed that this would not be a life-threatening thing.
When we arrived at the hospital the receptionist yelled out, "Our new PKU baby is here." Then she commented how well I looked for just having a baby. I was really feeling confused now. The doctor came then with a resident and was looking very concerned and much more empathetic. My husband was holding Dylan while the doctor introduced himself and started to explain. I looked over at my husband then, and saw tears rolling down his face, holding on to Dylan as if he couldn’t let go. I tried to stay strong at this point. The resident quickly obtained some Kleenex. It then became clear to the specialist and the resident/intern that we had no idea why we were there. They quickly took us into an examining room from the waiting room and started to explain. We were SO relieved that Dylan wasn’t going to die.
He’s 11 months old now and I still get so annoyed about how the whole situation was handled. It didn’t have to be that way. We could have all been killed driving in that blizzard at that speed. I have since made some recommendations but, doubt if that will make a difference. I really need to go and talk as a mother to graduating physicians who are planning to work it doctor offices. Then, if they are ever in the position to break the news to another family, they can do it in a much more informative and sensitive way.
On Christmas 1997, Dylan was 2 months old and the lab was to be closed over the holidays. Since he was still so young we wanted to continue checking his blood weekly. So the alternative was to come into the hospital and go to the emergency unit instead of the lab. So I did. I got there and no one was notified I was coming. We sat in Emergency and waited for a blood technician to come. No one came. Finally the nurse came over and asked again why I was there. When I explained she said, "Oh, PKU ... isn’t that when a child can become mentally retarded or something?" I gave her a quick lesson on PKU and continued to wait.
The same nurse now approached us (Dylan and I ) again and said she would do the blood work and took us into an examining room. She made a few attempts and then decided she needed help to hold Dylan’s hand/arm still. She was gone another few minutes and finally returned with a male patient care assistant. She proceeded to ask him to hold Dylan down so she could attempt to poke him again. The whole time I had my hand on Dylan and was trying to console him. He was crying like I had never seen him cry –He was literally shaking. It was terrible. He could hear my voice but, why was I not helping him? He had never cried when the lab drew his blood and they always drew the blood from his hand. The nurse repositioned herself for the next poke and pushed me to the side—I was in the way. I suggested she stop and call an IV technician. She said, "well I have never had trouble like this before." She seemed to think because I was a nurse I wouldn’t be so sensitive. I quickly reminded her I was there as a mother, not a nurse. Besides I know nothing about Pediatrics. I hated it in training because I couldn’t stand to see children suffer. She did finally get the blood in his arm rather than in his hand. Thank God it was over. I was afraid to pick Dylan up in case she said something. She sensed this and said you can pick him up now. I quickly grabbed him and held him so tight.
I went home and cried and cried to my husband. I felt I had let Dylan down. He needed me and I felt I wasn’t there to protect him. The nurse was so insensitive and why couldn’t she have let me hold him- not a stranger? It was like they were pinning him down and he was defenseless. A week later I was still so upset I went to the hospital administrator in charge of complaints and told my story. She was in total agreement and followed up on it. I felt a lot better.
It has been rough, but it has gotten easier as Dylan gets older and I am so reassured every time I look at him. He is meeting, if not exceeding, all milestones according to the pediatrician and it is easy to see. He loves to eat. I still have him on baby food and the formula in a bottle. I’m back to work and we are moving into a new house in 1 1/2 weeks. It has been so hectic and very busy. Once we get settled in the new house, then I will focus more energy on cooking/baking and getting him onto more solids.
His levels have been excellent since the first week. I go many days now and actually forget about his PKU. It does get easier. I still wonder "why us" sometimes, but he is so healthy I quickly stop feeling sorry for myself. I have to--so Dylan grows up with every opportunity. If I teach him to have a "complex" with his diet I’m not helping him. My husband and I agree we need to start eating better too. So eating habits will change for us all.