Six days before Max was born, Sister Dub gave birth to my sweet nephew Isaiah. I saw him make his way into this world, dark hair and a strong cry. He’s been kicking ass ever since. Every child born in America is tested for PKU or Phenylketonuria Isaiah tesed positive. It’s very rare, but can cause extreme brain damage if you don’t know you have it… it’s been a long road, but Isaiah turned six this weekend. It’s more than just leaving babyhood behind and moving toward big kid-dom. It also means he is leaving the danger zone for brain damage. I hope you’ll all welcome Dub and her guest post about PKU and Isaiah turning SIX!
My pregnancy with Isaiah is one of the best memories of my life. Because he was a bit of a surprise, it didn’t occur to me to think about anything that may go wrong. I could talk endlessly about our happy memories. After the initial shock faded, Ammar and I jokingly turned to a baby name book at the bookstore and said whatever name we point to, that will be the baby’s name. So he was “Dingbang” (a very popular name in China apparently) the entire time he was in my belly. More amazingly, my sister Stephanie was pregnant at the same time and so was my sister-in-law, Tamara! It was like our childhood games coming to life.
Max and Isaiah, in depth conversations at 5 weeks.
Isaiah was born with a thick, black mohawk, and dark, wise eyes. We were overwhelmed and overjoyed by this teeny-tiny person. When he was a week old, we got a call from his pediatrician. He had tested positive for something I had never heard of… “PKU”. “Don’t worry”, Tamara reassured us, “it is so rare, and almost always a false positive.” I worried. Postpartum is very real and was beginning to set in. I looked on the internet and saw the horrors of what I thought was to come. Words like “mental retardation”, “serious behavior disorders”, and “malnutrition” floated around in my head.
We did a second test. We had to wait days. All the while knowing, he was consuming the “deadly protein.” I had visions of feeding my child poison while he nursed in the middle of the night. The beginning of my crazy-making. We had an appointment at the hospital before hearing the final results. We were bombarded with specialist after specialist. Sitting in front of all these people throwing information at us, I finally asked, “so he has PKU?” Come on people, let us deal with that first. The biggest message that was told to us was, “before age 6, high phe levels can cause irreversible brain damage”. That echoed in my head for years – irreversible brain damage damage damage. I couldn’t even fathom getting to 6 – that was an eternity away.
let’s discuss how gorgeous my sister and her family are, shall we?
PKU, a.k.a. Phenylketonuria is a genetic disorder in which your body lacks the enzyme that breaks down phenylalanine or “phe”. Phenylalanine is an amino acid that helps build protein in your body. Basically, a person with PKU must follow a special, no or low protein diet and consume a special formula to supplement needed nutrients. If not treated, the phe builds up to toxic levels in the brain and the child will have permanent brain damage along with many other complications. When Isaiah was a tiny baby, we saw an entire bus filled with people, looking like zombies, who had not been treated early enough. It was horrifying and sad. So many lives lost. It breaks my heart thinking of all the children around the world who do not have access to the medical treatment we receive in America today.
Ammar and I figured out our routine. We had to take our baby for weekly blood tests at the hospital. Our wee little guy, starving from having to fast for 3 hours and then laying on a gigantic table so the lab techs (most of them incompetent with babies, I am sorry to say), could insert a needle into my crying infant.
We did find some hilarious moments during the dark times. They wanted us to get a urine sample from our baby. They handed us black vials and a little connecting device to put on his penis to help us collect the pee. The catch was, the pee couldn’t be exposed to light. We had to: a.) figure out the right moment to get him to pee, b.) get the contraption correctly on his little part so that nothing leaked and everything went into the vial not on our face, and c.) DO IT IN THE DARK. Keep in mind, I knew (from going against the doctor’s wishes and looking on the internet) that we were testing to see if he had an even worse disorder in which he would have to receive spinal taps and would not be expected to live past childhood. It was too much pressure. We couldn’t get the pee in the mother &*)^&&^%*%ing vile. Not to mention sleep deprivation.
We finally collected the golden liquid. The precious information that I was trying to convince myself would prove my child was going to be okay and live a normal life. We got this precious container to the hospital. The lab tech closed the door and reinforced we needed to keep it very dark. He opened the vile and then proceeded to OPEN THE DOOR INTO THE BRIGHT LIGHT. We killed him. Okay, we seriously thought about it.
Keeping Isaiah fed and in the “safe brain zone” became our norm. We constantly asked each other “did Isaiah have his formula?” and “how much protein has Isaiah had?” We made it work. I know I freaked some people out along the way. I will never forget when his daycare provider called me in complete tears because she accidentally gave Isaiah a saltine cracker. I had the school so afraid, they thought he was going to die.
Now Isaiah is a pro. He asks everyone “how much protein is that?” He reads nutrition labels everywhere. He knows what he can eat and what he can’t and he always asks before eating anything new. He is smart and funny and ridiculously strong. He plays soccer like he is getting ready for the world cup (which he watched religiously this summer), is madly excited about chapter books, has wonderful friends, got 4s on all but one item on his kindergarten report card (keeping his body calm, ha ha), and is pretty much an all-around cool kid.
I am writing all this because what seemed like an eternity away, is finally here. Isaiah is turning 6 years old on Sunday. The number that loomed over me since he was one week old. I know we still have a journey to come. There are still days when everyone is eating pizza and cake and bread and cheese and I hate PKU. When I hang out with other families I am often aware that our “normal” is far from it. We have to think about food and medicine and paying medical bills all the time. It can be a serious pain. I still get nervous when we go too long without getting a blood test to check his levels. If he has a bad day and acts “weird” (a.k.a. normal kid testing his limits), I freak out and think “his levels are high and the poison is in his brain…”
But I know he is fine. He is more than fine. I think he has learned many things from this disorder. He has learned to be patient. He has learned he can’t get everything he wants all the time. He has learned that people are different. He has seen some amazing children during hospital visits. We have seen cancer patients, burn victims, scary syndromes, and much, much more. We always left the hospital feeling thankful for what we have. So. Very. Fortunate. I have always said, the thing I want most for my child is for him to be a good person. So far, I think he is a better person than I am.
Turning 6 is such a celebration for our family. We did it. I want to thank all the friends and family who have helped us along the way. We are blessed with so many people who love and support us. I would be lying if I said I am not stressed about PKU anymore. But I can say I know we can handle it. This has been an amazing journey. I could not be more thankful.
He’s basically a Super Hero.
Happy birthday Dingbang… I mean, Isaiah. I love you very much.
Happy Birthday Isaiah! We can’t wait to see you again. Moving from LA, and from YOU is one of the greatest sorrows of my life. I just assumed I would see you every day. I’d pick you up from school and go to all your soccer games. I love you madly, Dingbang.