“I suffered a miscarriage during my third pregnancy. It was such an emotional time for us. We thought we were done having kids. I couldn’t bear it happening again. We had two healthy, thriving, beautiful daughters already, so we were grateful. Three years later, I had an overwhelming desire to have another, and my husband agreed. Little did we know, I was already pregnant! I was a nervous wreck my whole pregnancy. If you have ever lost a baby, you know exactly what I mean. The joy turns quickly into panic, anxiety, and fear. I prayed every day, multiple times a day, it was God’s will to let me have this baby, for it to be healthy, and for everything to go smoothly. Every. Single. Day. I prayed.
At 20 weeks gestation, we found out it was a boy! Finally, my boy. I was in disbelief and so unbelievably overjoyed. My pregnancy with Quinn was pretty standard. I suffered no complications, and he was full term. Delivery day is always my favorite part of pregnancy. The anticipation, excitement, and love that comes with delivery is like a drug. I remember having such a clear image of what I thought he would look like, and I couldn’t wait to meet him. Finally, I would get to hold this boy safely in my arms. My prayers had been answered! I felt like a pro — two kids, two healthy deliveries and babies. I had this in the bag.
Pushing time came so quickly. If you’ve ever been here, you are familiar with the wave of emotion and nervousness that washes over you when you hear the words, ‘You’re at 10, it’s time to push.’ Five or so big pushes later, and my son had entered this world. The time had come. My SON was here! They put him on my chest and my heart sank. How could this be happening? How could God do this to me, to us? I thought, ‘I have literally prayed every day for 40 weeks for a healthy baby. My faith was strong. I trusted you!’ I was so angry with God at that moment, and for a long time after.
When I saw Quinn for the first time I remember saying, ‘What’s wrong with him?’ Looking back now, I hate I said those words, because there is nothing ‘wrong’ with my son. Yes, he has visible differences, but he is perfect. My son was born with vascular birth marks, called port-wine stains, covering the majority of his body. If you aren’t familiar with port-wine stains, they are red birthmarks. They are not the same as ‘stork bite’ or ‘strawberry’ birth marks. They do not fade or go away, and they grow in proportion with the body as the body grows.
Port-wine stains are caused by capillary malformations. They usually start off as a flat, pinkish colored mark. But as the person gets older, they tend to get darker and can develop small lumps, as well as cause thickening of the skin in that area. My son has these throughout his body, but the most obvious is the very large one covering almost the entire left side of his face and head. When they placed my son on my chest, the joy I was expecting to feel was replaced with fear, sadness, and sympathy for my beautiful baby boy.
How hard was his life going to be? Were people going to stare at him? Were kids going to make fun of him in school? Would he love himself as much as we loved him? All of these thoughts were running through my head, and I hadn’t even gotten the worst news yet. I think it was so hard for me because there was no time to prepare. What Quinn has can’t be seen in any scan they do during pregnancy. To have your version of normalcy suddenly ripped away, and be thrown into a world of unknown, is a tough pill to swallow.
My husband was amazing with Quinn from the beginning. While I was an emotional wreck, racking my brain with all these negative thoughts and consulting ‘Dr. Google’ (which only made my anxiety worse), he was calm, tender, and adamant our boy was perfect. I will forever be grateful he was the calm to my storm during this time. Quinn’s left eye was extremely swollen when he was born. He didn’t open them very much at first, but as he opened them more, I noticed the eye which was swollen and affected by his port wine stain was very cloudy. The hospital pediatrician confirmed what I had noticed and began texting a pediatric ophthalmologist from Phoenix Children’s Hospital.
Quinn was diagnosed with congenital glaucoma at one day old. Freaking glaucoma? My brand new baby had a severe condition threatening his ability to see and probably causing him pain. With the revelation of the glaucoma, in conjunction with the placement of his port-wine staining, we were told he most likely had a rare disease called Sturge-Weber Syndrome (SWS). SWS happens when the port wine stain affects the brain. With it typically comes seizures, glaucoma, and the possibility of a varying range of deficits.
There are literally no words I could possibly type here to explain the gut wrenching heartache and pain I have experienced since Quinn’s diagnosis. I dug into every type of medical journal, article, and social media page I could find regarding this syndrome. At first, I could only focus on the bad. I dwelled on the worst case scenarios. I cried uncontrollably, multiple times a day, for roughly three months. I sank into depression, and I couldn’t pull myself out of it. I was at this point where I was just waiting in agony for his first seizure to come.
Months went by and no seizures. He was eating well, meeting his milestones, and was a super happy baby, for the most part. Quinn brought, and continues to bring, joy to anyone who meets him. His smile is infectious, and he is truly so dang cute it’s insane. I was smitten, and so was anyone blessed to spend time with him. I began to breathe again. I had found a community of Sturge-Weber families through Facebook and Instagram, who welcomed my family with open arms and were there for me with answers to my questions and with stories of hope and victory.
We got set up right away with a group of specialists at Phoenix Children’s Hospital. He sees a dermatologist, ophthalmologist and neurologist. At 17 days old, he underwent his first surgery. He had a procedure done to help lower the eye pressure in his affected eye. Watching your tiny, crying baby be taken back to an operating room is like getting sucker punched in the gut. This was the first time of many, he would be put under general anesthesia. His surgery was successful. It helped his eye clear up and made it so we were able to control his pressure with drops in his eye, three times a day.
The doctor’s appointments are endless with this disease, and more times than not, I am left with more questions than answers at the end of them. With SWS being rare, there really isn’t many specialists who know a ton about, or have had a ton of experience, with it. I have been given the blanket answers, ‘We don’t really know, we just have to wait and see,’ and ‘Every case is different so there is no definite answer,’ and ‘Not that I’m aware of,’ more times than I can count. As a parent, those are things you do not want to hear regarding the health of your child and what quality of life you should expect them to have. The first couple months of his life, we lived three hours away from the nearest children’s hospital in Arizona.
My husband worked full time, I had a 4 year-old home with me, and an 8 year-old in school. I was driving six hours round-trip, with a newborn and 4 year-old, for every appointment. And I had to arrange school drop-off and pick-up for my 8 year-old. It was so stressful and expensive. We decided to sell our home and move to California to be close to Los Angeles Children’s Hospital. We uprooted our family and sold our home in a town we grew up in and loved. A town where we had childhood friends who had become our family. This disease had officially changed our whole lives. We got settled with our new specialists, and Quinn began receiving laser treatments on his facial PWS.
These treatments are so important for the health of the birthmark, and to help ensure the growths and thickening don’t happen. The earlier you treat, the higher the chance these results will be obtained. This was so hard on my mama heart, but I know it was the best decision we could make for him.
Shortly after the move, our worst nightmare came true. My husband was away on a business trip a few states over, and Quinn had his first seizure. He woke up from a nap one day, screaming. I noticed he couldn’t sit up. He had no strength or control of his right arm and leg, the right side of his face looked droopy, and he was drooling a lot. I called my sister and we got in the car and started making our way to the hospital. In the car, I noticed he was acting weird. I told my sister to pull over and I called 9-1-1.
My son was placed on a stretcher with a neck brace, while screaming and crying like I’d never seen him before. We were both loaded up into a helicopter. The 16 minute helicopter ride felt like an eternity. I was strapped into a seat, unable to move and tend to my son, who was now in the midst of another full-blown seizure. I was helpless and hysterical. I still am haunted by this vision, and I try really hard not to dwell on it.
From there, everything happened so fast. We landed and they unloaded us. My boy was still shaking uncontrollably, he wasn’t crying anymore because he physically couldn’t, and the silence was deafening. This is about the time I prayed like I had never prayed before. ‘Please God, help him. Help me to remain calm. Wash peace and comfort over me and Quinn. Ease his pain and fear, and let him overcome this through you, Lord. I know you can handle this!’ I remember repeating the phrase ‘please God’ over and over out loud. I couldn’t do anything but pace like a mad woman. I couldn’t help my baby! The vision of his little body shaking and the noises he was making, are forever seared into my memory. It’s a nightmarish loop which will play on repeat if I let it. They quickly gave him a shot of Ativan to stop his seizure, started an IV, and gave him a CT scan to rule out stroke due to his paralysis.
We were there for four days the first time. My girls were struggling being without me and not knowing how Quinn was doing. They had never been away from me and their father simultaneously, for this long, and I hated having to leave them. But my baby needed me. He needed me to be present and supportive for him. Thankfully, my dad, stepmom, and sister all came together and helped with the girls. Our family and friends have been amazing. Quinn suffers from something called Todds Paresis after his seizures. That is why he becomes almost paralyzed on the right side. This first time, it took three days for him to regain strength on that side. We were discharged with a new medicine regimen, consisting of Keppra and baby aspirin, to hopefully control the seizures.
From this point on, I pretty much constantly lived in fear. Just lying in wait for this beast to return. He had roughly one episode of cluster seizures a month. His clusters consisted of 2-4 seizures back to back. He has been admitted several times since then. And he’s had multiple EEG’s, a couple MRI’s, and a second CT. We’ve had to increase his Keppra dose multiple times because he continued to have breakthrough seizures. In September of 2019, Quinn began having seizures at home one night. We brought him in to CHLA, got them under control, and were discharged 24 hours later. That night he began seizing again. We called 9-1-1 and the ambulance took him to the nearest hospital. On the way there, his seizures stopped. Since he was just admitted to CHLA the day before, and had literally just had all the testing done, they said there really wasn’t much they could do.
They sent us home. A couple hours later, he began seizing again. This time it wasn’t stopping, we didn’t have any emergency meds on hand, because no pharmacy in the area had it in stock when we went to get it filled. After three minutes of him seizing, I was on the phone with 9-1-1. Quinn was still seizing with no end in sight, four minutes… five… six… seven. I was hysterical. I was trying to stay calm for him, but I just couldn’t. My baby! My husband was laying next to him trying to comfort him while I was on the phone with the dispatcher. The ambulance was on their way with a helicopter in route so we could be taken to CHLA again.
By this point I was saying, ‘God please, make it stop. I know you can. Please don’t take my baby from me.’ Over and over again. The EMTs got there 11 minutes later and administered Ativan. His seizure subsided. My husband rode in the helicopter with him because I couldn’t bear to do it again, not in the state I was in. Quinn needed a rock and someone who was calm, and it was not me at the moment. We were admitted, another MRI was given, and his seizure med dosage was increased. We were discharged four days later. He hadn’t had any seizures, but his paralysis was still there and we didn’t know what to expect — 14 minutes is a long time to seize, at this point it was in God’s hands.
Here we are, almost five months later and Quinn has yet to have another seizure! I honestly chalk it up to God. I still live with anxiety on a daily basis, and I have to fight off the darkness of the black hole which tries to suck me in. But my boy is seizure free and thriving. He receives PT, OT, and vision therapy six times a week, and he is getting stronger by the day. The resiliency he has is truly amazing, and I am so honored to be his mom. I’m not angry with God anymore. I actually thank him regularly for giving us Quinn, just the way he is. Sure, we get stares when we are out. And sometimes uneducated people say things they shouldn’t. But I try to take those moments, respond with grace, and use it as a teachable moment.
Quinn is a miracle. He has taught me more in his 17 months of life than I’d learned in my 29 years before him. He has brought our entire family closer together, and he has somehow made my faith even stronger. I know in my heart God is carrying him through this life and he is meant for something great. I can’t wait to watch him in action. I continue to reach out to others who are going through this journey. And I always try to offer up hope, because I’ve learned even though some days are so dark, there are many more days filled with light. Bringing awareness is so important. Inclusion is so important. We need more kindness and acceptance in this world and I am so humbled to have Quinn in our lives to help us teach that. ”
This story was submitted to Love What Matters by Michelle Salas. You can follow her journey on Instagram and her Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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