But, we’re not Scandinavians! Entering the world of Albinism

As I contemplate the past 29 years since my son was born, and reflect on his birthday today, it brings to mind our journey.

About 8 months or so after our wedding, we discovered that we were pregnant with our first child. This was a very exciting time for both families as our baby would be the first grandchild on either side. There were great expectations, and we set about making sure that I would have a healthy pregnancy and childbirth. Rather than go the traditional (i.e. heavily intervention-focused) route, we chose ‘Natural Childbirth, the Bradley Way.’ Dr. Bradley focuses on making good, healthy choices, having a diet high in protein (after all, you’re growing a baby) and minimizing any medical interventions (this is a natural thing, NOT a medical event). If you’re really interested, feel free to check him out http://www.bradleybirth.com/ . We went down the path of using a Certified Nurse Midwife rather than an OB/GYN, and made plans for a natural childbirth at our local hospital. While we wanted to forgo any medical interventions, we weren’t brave enough to actually do a home-birth, so we picked what we thought would be best – the local hospital with a birthing center, where we could control most aspects (but have access to medical care if the baby or me needed it). We had our whole ‘birth plan’ ready, and were as prepared as we could be for the big day.

My son was born late in the evening three days after my dad’s birthday in 1990. After being in labor for a really long time (aka about 8 to 10 hours), and pushing for what seemed like hours on end, he finally emerged into the world. Luckily for me, the Midwife had no idea how big he was, so I was able to have a fully natural childbirth experience and deliver a nearly 10-pound baby! (This is remarkable for anyone who knows me – I’m just short of 5 feet 3 inches, and weighed all of 95 pounds before pregnancy). My son came into this world with the most amazing shock of white hair and bright, blue eyes. Everyone exclaimed over our Scandinavian baby (ignoring the fact that my ancestry is British Isles and The Netherlands, and that his father was adopted so we didn’t really know his ancestry). So, clearly, he took after his father, and his father’s birth family must then be of Scandinavian descent, even though dad had brown hair and olive-toned skin – that aside, a Scandinavian looking baby is not all that unusual in Minnesota.

Once home, we set about learning about our baby. He seemed to like to sleep during the day, and was up all night. He definitely didn’t like the sun and tended to squeeze his eyes shut whenever we went outside. Being the size of a 3-month old at birth it meant that he ate every 2 hours around the clock, this resulted in me being up all night as well. My mother advised that I should drink tea (i.e. caffeine) in the morning, and have a glass of wine at night. Since everything goes to the baby through mom’s milk, she figured this would make him be more alert during the day, and more likely to sleep at night. Of course, it didn’t actually work that way – it made the momma more alert during the day, and made those late-night feedings an event where I was trying hard not to fall asleep! As a result, when I had to return to work 3 months later, we fully embraced the family bed so that I could actually get some sleep before having to go to work.

As with most first babies, every major milestone was duly recorded in the baby book, and there was a great focus on when he was reaching those all-important goals of rolling over, laughing, getting teeth and so on. One goal that was missed and started me worrying was him focusing on me when he was nursing. I started to notice that his eyes weren’t actually fixing on anything at all, rather they seemed to be moving from side to side in a continuous motion. We started to joke that he was like the Cylon in Battlestar Galactica, but that didn’t stop us wondering if something was seriously wrong with his eyes. We were pretty sure that he could see (not blind), but clearly something wasn’t right. At his 2-month, well-baby visit, I pointed this out to his Pediatrician. She told me that some babies don’t hit the milestones when the books say that they do (in other words, you’re overreacting). I wasn’t going to take this for an answer since he was well past the point of achieving this milestone, and he had achieved all the other ones on target (or even before since he was physically much larger and hitting the large motor ones rather easily). She finally agreed to refer me to a Pediatric Ophthalmologist, but let me know that this was only because I was being silly and not because she felt it was medically necessary. Insurance being insurance, I didn’t really care about her opinion – the medical plan would pay for it whether she thought it was necessary or not.

When the time came, I fortunately chose to take him to one of the highest rated Pediatric Ophthalmologists in the Twin Cities area (only the best for my baby!). Since I was anxious, rather than wait for an appointment in his St. Paul office, I agreed to take him to Stillwater, in order to see the doctor immediately. Since we didn’t really think there was anything wrong, his dad decided to go to work, and I made the 20-mile drive myself. As we went through the normal intake process, the assistant did the initial paperwork. He looked at my son and said, ‘I know what this is, but the doctor has to tell you.’ I was confused, but waited patiently for the doctor to come in and examine him. In retrospect, I think the doctor only did the exam to satisfy me that he had actually done ‘something.’ At the end, he said that my son has albinism, which meant that he has no pigment in his skin, hair or eyes. As a result of the lack of pigment in the eyes, his optic nerve had mis-formed and that was causing nystagmus (the smooth, side-to-side movement as his eyes searched to find a place where they could focus and get a clear picture). I had never heard of albinism, and couldn’t really understand what he was telling me. He went on to say that he’d probably never drive (thank you! I was actually contemplating having my 2-month old drive us back to St. Paul). The rest of the appointment went by in a blur. And, it taught me a valuable lesson – if you’re going to see a doctor about something, even if you’re told it’s probably not serious, don’t go alone!

I drove the longest 20 miles in my life back to St. Paul, and went to pick up dad from work. We cried over a situation that we didn’t understand, but knew that something was wrong with our baby. This was well before the internet, and we had nowhere to really get information about what this diagnosis actually meant. My younger sister was taking classes at the University of Minnesota, so she went to the medical library and copied articles about albinism. These were probably not the best thing for us as the articles were clinical in nature, and the photos of people with albinism were absolutely horrible (taken in stark clinical settings and overexaggerating features). They didn’t say anything about the practical implications or what this meant for our son. In other words, they were interesting (explaining all the known variations at the time, and giving us a refresher course in genetics), but they didn’t tell us what we really wanted to know – what does this mean for our baby??

As we tried to gain an understanding of what this diagnosis meant, his dad had a flash of insight into my college roommate during my junior year at Macalester. This young woman was very fair and had beautiful white-blonde hair. She had apologized to me up-front when we started rooming together that her vision was quite poor, and therefore, if I waved to her from across campus and she didn’t acknowledge me, it wasn’t because she was rude – she just couldn’t see me. She didn’t drive, but then neither did I since Mac was a mainly residential campus at the time, and I couldn’t afford a car anyway. My husband asked me whether I thought that our son had the same thing as my old roommate. Of course! Yes, she had terrible vision (which the doctor had warned us), very pale skin and white hair – it had to be. I called her immediately, excited that I finally understood her and to tell her what a great coincidence that my son shared the same condition. This was the first time I met denial and a lack of acceptance when it comes to albinism. Rather than greeting the news with excitement that we could share stories and experiences, she was horrified – upset to be called out and identified. It was almost as if I had exposed a great secret that she had spent years trying to hide. This news, which I thought would be met with a new-found reinforcement of our friendship became the one thing that broke us apart. She was also shocked at how I was handling things – I had bought some baby sunglasses (specialized ones that block glare for babies with photophobia). When we went to lunch at a restaurant, a woman had commented on how cool my son looked with his shades (aka ‘aren’t you totally posh with your baby in his sunglasses’). I calmly stated that my son’s eyes were extremely sensitive to sunlight and that he needed them to protect his eyes (in other words, ‘don’t call me posh you b****’). My old roommate was surprised at how calm I was – I said, but it’s the truth. I didn’t feel the need to explain the medical diagnosis, but I didn’t want this woman accusing me of being posh. I also wasn’t overly offended, upset or crushed that my son needed to wear sunglasses. For me, it was just the way it needed to be for him.

She later told me that she just couldn’t have anything to do with me and my son since her own albinism was so difficult for her to acknowledge and deal with in her own life. I think that my way of handling it (taking a practical approach) was very different from how her own mother had handled it, and most likely how she herself was dealing with it. While we never spoke again, she did me the favor of passing along some information about a ‘club’ that her mother had been involved with when she was younger. It was called NOAH (National Organization for Albinism and Hypopigmentation – https://www.albinism.org/ ). While she had never gotten involved (wanted nothing to do with other people with albinism), it seemed to have helped her mother, so she thought I might find it useful. I’ve tried to track her down over the years, once the internet came into being and you could find people, but I never have – I wish I could find out whether she ever came around to accepting her ablinism.

At the time of the diagnosis and initial discovery about what albinism means, we weren’t able to connect with NOAH (the organization was in its early stages and run by volunteers). Our son’s poor Pediatrician was horrified that she had so clearly missed the obvious signs – she was so caught up in him being a little blue-eyed Scandinavian baby that she didn’t notice his skin was significantly paler than mine (the descendent of mostly British Isles and northern Europeans), and that the eye movement wasn’t actually a normal ‘pre-fixing’ thing. In some ways, I couldn’t blame her, but I did wonder what would have happened if I wasn’t the persistent type – how much longer would it have taken to get the diagnosis?

We were referred to State Services for the Blind for a consultation since albinism results in varying degrees of low vision. The consultant who came out was amazing – he told us that the vision issues in albinism really aren’t that bad (in the grand scheme of being blind or visually impaired). He advised us to send our son to regular schools and to encourage him to try doing anything. He warned us that if we sent him to a special school, he would likely be the most ‘able’ student there – other children with more serious conditions would look up to him and be challenged by what he could do, but where would this leave our son? He wouldn’t have someone to challenge him and help him develop to his full potential. The consultant also said that we shouldn’t assume that he had any limitations at all, but to let him find out for himself what he could or couldn’t do. He also agreed that driving wasn’t really a concern, and by the time he turned 16, there could be technology that would allow him to drive, even if his vision was poor. I sometimes wonder what would have happened had we been visited by someone who had a more ‘disability’ focus to their view of low vision.  However, we came out of this meeting with a conviction that our son wasn’t going to be limited by anyone, or anything. While we took advantage of the Early Intervention services, it was to make sure he was achieving milestones on time, to give us ideas about how to help him use what vision he had, and to gain access to this awesome indoor playground that we could visit in the winter in Minnesota (hey, there’s a practical side to everything!).

As we continued to learn what we could about the condition from medical journals and by watching our son, we started to discuss baby #2. We knew the genetics – if mom and dad have a genetically recessive trait, then each child has a 25% chance of having the recessive trait. This was the old high school biology lesson where dad gene’s are Aa and mom’s are Bb – when we combined them the first time, our son came out with ab (i.e. he has the recessive trait); any future pregnancies could result in children with Ab, aB, AB, or ab – in other words, a 25% chance of another child with albinism, and a 2/3^rd chance of a child carrying the recessive gene. We were told, at the time, that if baby #2 came out with albinism, he/she would be just like our son (and it really wasn’t all that bad). We also mused that we had plenty of brimmed hats, sun protective fabric swimsuits and sunglasses to block the sun, and were becoming quite the expert on babies with albinism. So, we went ahead and had baby #2 – who entered this world as a beautiful brown-haired lass.

In the spring of 1992, we moved across the country to Harrisburg, Pennsylvania with our toddler son and baby daughter. By chance, in 1994, we came across a ‘NOAH News’ magazine in the vision specialist’s office in our new town. It happened to be advertising a national conference being held in Philadelphia within the next month or two. Philly was a mere 2-hour drive from our new home. Even though my old roommate and I had lost all contact, I remembered how she said that NOAH seemed to help her mother, so we dropped everything and signed up for the conference. When we arrived at hotel registration, there was a little girl with albinism who looked to be about my son’s age. He was so excited to see someone who looked just like he did – even at 4 years old, he already knew that he looked different than other kids. There was also a conference for the African Methodist Episcopal Church at the same hotel, so we had quite a contrast in the lobby. One of the AME ladies came up to us and asked if the little girl in the line for reception and my son were cousins (i.e. they look so much alike). We just laughed and said, ‘somewhat’ (after all they may have shared the same genetic code that gave them their albinism).

Since that conference in 1994 when we finally found our ‘tribe,’ the experience has been much different than for many people with albinism. My son started out his early life knowing that there are people like him all over the world – he is not alone, even if he’s living in a town where there are few, if any other people with albinism. (The incidence rate in the US is approximately 1 in 16,000, so one could potentially go for quite a long time without meeting or seeing another person with albinism). We took as many opportunities as possible to gather with our new NOAH family while he was growing up so that he could form the bonds of friendship with those that faced some of the same challenges when it came to varying degrees of low vision, looking very different (especially for those who came from non-Caucasian families) and dealing with school, jobs, families, etc. that aren’t always quite so understanding. My daughter also joined the larger family of ‘normally pigmented’ siblings and fell in with her own crowd at NOAH events. For myself, I joined the board of directors for NOAH and helped to develop the ‘Rapid Response’ – a team of parents who volunteered to talk the parents of newly diagnosed children off the ledge. While it’s been nearly 30 years, doctors are still spreading misinformation about albinism, and many have never seen another patient with the condition (so tend to make things up). After a failed attempt at attending public schools, my son attended the local Catholic elementary school. Based on that experience, I also wrote publications about how to educate a child with a vision impairment in private school (when the US government doesn’t really give us the option of getting disability services in a private setting).

Over the years, we’ve continued to be involved with NOAH and some of my dearest friends are a part of the organization. While my son is now off on his own and getting on with his life, the early years in NOAH were a big part of giving him the foundation for acceptance as well as understanding his albinism. So many great memories from over the years as both NOAH and my son grew up.

Some things we encountered over the years (not an exhaustive list, by any means):

• A member of the extended family who insisted that the University of Minnesota hospitals could do surgery to ‘fix’ his eyes.
• The posh baby in sunglasses, and my response above
• A woman who came up to my 3-year old son and exclaimed over his beautiful hair, asking me how I got it so white. I replied, ‘I dunk him in bleach.’ She looked shocked, but I think got the message – stupid question! Do you think I actually dye my son’s hair??
• The struggle to explain why his sister’s eyes could be fixed with surgery, but his could not. (She had eye muscle surgery at 18 months old to fix crossed eyes. He knew that there were issues with his eyes, so couldn’t understand why there wasn’t a surgery for him).
• Him getting up in front of his preschool class to explain his ‘genetical’ condition and why he might not be able to see his friends across the playground.
• My son answering a question about his hair when he was about 5 years old. When asked where he got it from, he said ‘the hospital.’
• The little old ladies who advised me that once my son hit puberty, his hair would turn brown (just you wait!). I chose not to correct them.
• Needing to get his doctor to write a ‘medical order’ for sunscreen so that the summer day camp staff would actually reapply it when the kids were playing outside all day in the sun. For some reason, they felt that a kid on ADHD meds needed adult intervention to ensure they took their meds, but my 8-year old son who needed sunscreen just as much (or more) than those kids, should be expected to apply it on his own, and remember when an hour had gone by.
• The local police in New Hampshire who came into a bagel shop to talk to my son, because they recognized him (yep, pretty recognizable kid). And, the fact that teachers could always spot him when trouble was going on, but couldn’t remember which brown-haired kids he was with at the time.
• A 7^th grade French teacher who attended an IEP meeting and declared that my son needed to learn to see. This was after discussing the fact that he couldn’t switch from near vision (his class paper) to far vision (the blackboard) and back again easily, so was struggling to complete class assignments. The vision specialist asked the teacher to leave before I jumped down her throat.
• A substitute teacher that gave him detention when he ignored her mouthing instructions to him across the church pew at a school mass. (Fortunately, his class teacher and the principal intervened before I killed her).
• The camp counselor at a mountain biking summer camp who relayed to us that the fact my son couldn’t really see the rocks and holes along the mountain paths they rode was no different than the other boys his age who could see them, but chose to ignore them. In other words, he was riding pell-mell down the mountain just like the other boys his age.
• The enthusiastic Dermatologist I took him to at 13 when we were advised to have his skin checked (before the inevitable changes that take place around that time). The doctor had never seen a person with albinism before. Later that night, he excitedly called me to tell me that he’d been doing some research and came across this great organization called NOAH, and that there were all kinds of publications about the different aspects of albinism available. I gently told him that I was on the board of directors and that I had actually written several of those publications.
• The embarrassment my daughter suffered when they used to walk home from the bus together. Someone asked if they were a couple – I guess with their different coloring, they didn’t look like brother and sister.
• All the wonderful people we’ve met over the years at various NOAH events, as well as the incredible opportunities via Perkins School for the Blind in Boston. The two trips he made to NASA’s Space Camp for Visually Impaired students in Huntsville, Alabama.
• Writing the letter to withdraw him from his high school when it became obvious that they couldn’t effectively deal with a visually impaired teen, then seeing him score an almost perfect GED test.
• Riding along with him in Rochester, New York soon after he got his driver’s license – over 20 years after the doctor said he’d never drive a car. And, so many other ‘he’ll never do xyz’ things that people warned us about when he was a baby.
• Watching him grow his career in a field that he’s passionate about and achieve great things in his chosen profession.

#NOAHAlbinism #Albinism