2 years old
Our journey began moments after the doctor told us, “It’s A Girl.” Shortly after that announcement, we were told our baby girl was born with a Port Wine Stain Birthmark. I think we are some of the lucky ones to know within minutes of birth, but it was also scary as we had to turn our mom and dad hats earlier than we had hoped.
Mackenzie’s PWS runs from the corner of her left eye to about 2 inches into her scalp which made our doctor quickly research the next plan of action. Before I had the opportunity to hold my baby, my husband Clete had to give the OK for her to have her first MRI.
With Mackenzie’s birthmark’s location, the doctors realized that there could be other complications and wanted to check her brain and to get a base line for any issues that may arise in the future.
Within her first 3 hours of life, Mackenzie saw the Pediatrician, Ophthalmologist and Radiologist all while being adored by her new family. I have to admit it was an emotional time, as I was coming out of anesthesia myself after losing a lot of blood during surgery.
We found out quickly that Mackenzie is strong as she was perfectly behaved for the MRI and passed Round One with flying colors. She also aced her eye exam with eye pressure in the normal range.
As many parents in the 21st Century would do, we fired up Google. I know people say, stay away from the internet, that it can scare you for the worst case scenario, but for me it educated us. I had never heard of a PWS and I wanted to be prepared to know what to ask the doctor and what our next step should be. We left the hospital with our next step which was to check her eye pressure at one month old.
When a person has a PWS near the eye, doctors advise multiple exams over the years. Our pediatric eye doctor made the decision to see us at one month and to all of our surprise that was the best step we have made so far. At that one-month appointment, we found out Mackenzie’s eye pressures was very high at 28. A normal range is around 14-18 and is considered high when over 20. Our little girl had Glaucoma and started Timol eye drops twice a day ever since. I can only imagine what would have happen if we had waited 6 months, like the doctor had read, for that appointment. Surgery could have been in our near future.
With her eye pressure under control we continued to read up on the options to treat the PWS. Our Pediatrician said they would assist us in whatever we decide. Clete and I debated on when to start laser treatment. Do we start it during this first year or wait until she is older? I continued to read about other families and what they were doing. When Mackenzie was four months old we took our first step towards treatment when we went to visit our first Pediatric Dermatologist.
Like any new parents we didn’t know what to ask but didn’t want to make the wrong decision. I remember going onto one of the Facebook groups and asking what I should ask the doctor. Having that support was very helpful. We left our first appointment even more confused but decided to start treatment early so we could give her a head start on clearance. Personally, I didn’t want the 16-year-old Mackenzie to say, “Mom, why didn’t you start treatment earlier?”
For us, finding the right doctor at the right time was just what we needed. With some assistance from a family friend we chose to do treatment at the Mayo Clinic in Rochester, MN. The three-hour drive one way, for a procedure that last less than two minutes, was well worth it.
In September 2017, Mackenzie had her first treatment at the age of seven months. We went into the room and we didn’t know what to expect. Clete wasn’t sure if he wanted to stay in the room, but we both were there supporting our little Miracle Mack the whole way through.
With our eye special glasses on, I held Mackenzie, with some help from the nurses. I was expecting her to scream the whole time, but I was amazed that the only tears she shed were when they placed the stickers on her eyes. Ninety seconds after the doctor began, she was done and there were no tears. I think back about that day and think – our daughter is amazing. She is so strong. She was giggling and smiling the whole three-hour drive home.
She didn’t seem to even know what had been done and honestly, her polka dots were pretty cute. I remember one of my family members said at Christmastime that her dots look like an accessory.
In my research there are a variety of options on the frequency of treatment. For us, our doctor suggested us coming back every three to four months. I was amazed that even a few weeks prior to returning for more treatment the PWS seemed to get lighter.
Our doctor originally thought we would stop treatment after she was 1 years old because she would be too strong to be held down. Our doctor also thought it would be best not to put her under GA unless necessary until she is 3 years old. I am amazed how much difference her PWS looks from when we started, in just four treatments.
Mackenzie’s early life journey with PWS has been interesting. She had another MRI at 8 months old. There was no sign of issues on the brain, but was diagnosed with Sturge Weber Type 2, due to her PWS and Glaucoma. She continues to be evaluated annually with the Pediatric Neurologist and sees the Ophthalmologist every four months.
We are lucky to have a great support since Mackenzie was born. Some days I feel bad because she doesn’t have seizures or her PWS is light and not huge but it doesn’t make it easy. Just last week, it was so hard because all I could think about were her eyes and glaucoma and her never having her eyes fixed. I knew she would have pressure checks and eye drops at the least forever. But we are lucky and I am grateful.
I would like to think that through this whole journey I have been strong and that I took each step as they came but I would be lying if I didn’t say some days it is just too much. That I wish she didn’t have to deal with all of the day-to-day struggles. On those days, I look over to Mackenzie and realize she is amazingly strong and we are so blessed to have her in our life. I also remember when the kids at daycare asked another mother where her baby’s birthmark is. When that mom said he didn’t have one, the kids said, “I’m sorry.” It is that simple, Mackenzie has a birthmark and that makes her SPECIAL! And on days when other people ask what is wrong with her face. I am going to remember those little kids wishing that all babies had a birthmark. If we can give hope in just one persons life, then it’s worth it.
We are LUCKY and Mackenzie is AMAZING!