‘Please, make it stop. Don’t take my baby from me!’ The 16-minute helicopter ride felt like an eternity.’ Mom has a child with Sturge-Weber Syndrome, ‘I am so honoured to be his mom.’

“During my third pregnancy, I had a miscarriage. For us, it was an emotional period. We thought we’d had our fill of children. I couldn’t stand it if it happened again. We were grateful because we already had two healthy, flourishing, lovely girls. I felt compelled to have another child three years later, and my husband consented. We had no idea I was already pregnant! Throughout my pregnancy, I was a nervous wreck. If you’ve ever lost a child, you understand what I’m talking about. Panic, anxiety, and fear swiftly replace the joy. Every day, numerous times a day, I prayed that it was God’s will that I have this baby, that it be healthy, and that everything would go smoothly. Every. Single. Day. I said a prayer.

We discovered it was a boy around 20 weeks of pregnancy! Finally, my young man. I couldn’t believe my eyes and was ecstatic. Quinn’s pregnancy was very ordinary. I had no difficulties, and he was born at full term. My favourite part of pregnancy is always delivery day. The joy, excitement, and love that accompany delivery are addictive. I remember having such a vivid picture of how he would look, and I was so excited to meet him. Finally, I’d be able to hold this boy in my arms safely. My prayers had been heard and heard and heard and heard and heard and heard and heard and heard. Two kids, two healthy deliveries and newborns made me feel like a pro. This was in my possession.

Time flew by so rapidly when it came to pushing time. If you’ve ever been here, you know the rush of emotion and nervousness that comes with hearing the words, ‘You’re at 10; it’s time to push.’ After around five or six huge pushes, my kid was born. It was now or never. My SON has arrived! My heart sunk as they placed him on my chest. What may be causing this? What right did God have to do this to me, to us? ‘I have prayed for a healthy baby every day for 40 weeks,’ I thought. My trust was steadfast. ‘I had faith in you!’ At the time, and for a long time afterwards, I was furious with God.

Courtesy of Michelle Salas

‘What’s wrong with him?’ I remember thinking when I first saw Quinn. I regret using those comments today because there is nothing ‘wrong’ with my son. Yes, he has visible flaws, but he is flawless. My son was born with port-wine stains, which are vascular birthmarks covering most of his body. Port-wine stains are crimson birthmarks if you’re not familiar with them. They’re not to be confused with stork bite’ or strawberry birthmarks. They don’t fade or disappear, and they grow in proportion to the body’s size.

Capillary abnormalities cause port-wine stains. Typically, they begin as a flat, pinkish-coloured mark. However, as people age, they tend to become darker and acquire little lumps and thicken the skin in that area. My son has them all over his body, but the most noticeable is a big one covering nearly the entire left side of his face and head. Fear, anguish, and sympathy for my beautiful baby boy replaced the joy I expected to experience when they placed him on my chest.

How difficult would his life be? Was he going to get a lot of stares? Were his classmates going to tease him at school? Would he be as devoted to himself as we were to him? These thoughts raced through my mind, and I hadn’t even received the worst news. It was difficult for me because I did not have enough time to prepare. Quinn’s condition isn’t visible on any pregnancy ultrasound. It’s a difficult pill to swallow to have your sense of normalcy snatched away and put into an unknown world.

Courtesy of Michelle Salas

From the beginning, my spouse was fantastic with Quinn. He was calm, compassionate, and adamant that our boy was wonderful, while I was an emotional disaster, racking my brain with all these terrible notions and consulting ‘Dr. Google’ (which only added to my worry). I’ll be eternally grateful that he was the calm in my storm at the moment. Quinn’s left eye was enlarged from the time he was born. He didn’t open them at first, but as he did, I observed that the eye enlarged and stained by his port wine stain was very blurry. The hospital paediatrician corroborated my observations and began messaging a Phoenix Children’s Hospital paediatric ophthalmologist.

Quinn was diagnosed with congenital glaucoma when he was just a few hours old. What the hell is glaucoma? My brand-new kid had a serious issue compromising his vision and giving him discomfort. With the discovery of his glaucoma and the placement of his port-wine staining, we were told he most likely had Sturge-Weber Syndrome, a rare condition (SWS). When the port wine stain damages the brain, SWS occurs. Seizures, glaucoma, and the likelihood of a wide range of impairments are all common side effects.

Courtesy of Michelle Salas

There are virtually no words I could use to express the heartbreak and pain I’ve felt since Quinn’s diagnosis. I looked up this syndrome in every medical publication, paper, and social media website. At first, all I could think about was negative. I kept thinking about the worst-case situations. For three months, I cried uncontrollably numerous times a day. I fell into deep despair from which I was unable to recover. I was at a stage where all I could do was wait in agony for his first seizure.

Months passed with no seizures. He was eating well, meeting his milestones, and, for the most part, was a really happy baby. Quinn gave delight to everyone he met, and he continued to do so. His smile is contagious, and he is ridiculously adorable. Anyone who had the good fortune to spend time with him was smitten. I regained control of my breathing. Through Facebook and Instagram, I met a community of Sturge-Weber families who welcomed my family with open arms and were there for me with answers to my questions and stories of hope and victory.

Courtesy of Michelle Salas

We were immediately connected with a team of specialists at Phoenix Children’s Hospital. He sees a dermatologist, ophthalmologist, and neurologist, among other specialists. He had his first operation when he was 17 days old. He underwent surgery to assist reduce the pressure in his damaged eye. It’s like being hit in the gut when you see your little, crying infant being wheeled back into a surgery room. He would be put under general anaesthesia for the first of many times. His operation went well. It cleared out his eye and allowed us to control his pressure with three drops in his eye three times a day.

With my sickness, the doctor’s appointments seem to go on forever, and I’m usually left with more questions than answers at the end of them. Because SWS is so uncommon, there aren’t many professionals who know a lot about it or have experience with it. ‘We don’t know; we’ll just have to wait and see,’ and ‘Every instance is different. Therefore there is no clear answer,’ and ‘Not that I’m aware of’ have been offered more times than I can count. As a parent, they are the kinds of things you don’t want to hear about your child’s health or the quality of life you should anticipate from them. We lived three hours away from the nearest children’s hospital in Arizona for the first few months of his existence.

My husband worked full-time, and I had a four-year-old at home and an eight-year-old in school. Every appointment required a six-hour round-trip drive with a baby and a four-year-old. I also had to organise for my 8-year-school old’s drop-off and pick-up. It was stressful and costly. We chose to sell our house and relocate to Los Angeles to be closer to the Children’s Hospital of Los Angeles. We relocated our family and sold our home in the town where we grew up. We grew up in a town where our childhood pals had become family. This sickness forever altered our lives. Quinn began undergoing laser treatments on his face PWS after settling in with our new physicians.

These therapies are critical for the health of the birthmark and the prevention of growths and thickness. The earlier you begin treatment, the more likely you will achieve these results. This was difficult for me as a mother, but I know it was the best decision we could have made for him.

Courtesy of Michelle Salas

Our biggest nightmare came true not long after we moved. Quinn suffered his first seizure when my husband was away on a work trip a few states away. He screamed when he awoke from a snooze. I realised he was unable to sit up. He lacked strength and control in his right arm and leg, had a limp right side of his face, and was drooling profusely. I dialled my sister’s number, and we got in the car and began driving to the hospital. I saw he was acting strangely in the car. I urged my sister to get out of the car and dialled 9-1-1.

My son was strapped to a stretcher and strapped to a neck brace, wailing and crying as I’d never seen him before. Both of us were loaded onto a chopper. The 16-minute helicopter journey seemed to go on forever. I was shackled to a seat, unable to move and care for my son, who had another full-fledged seizure. I was helpless and laughing uncontrollably. This vision continues to plague me, and I make every effort not to concentrate on it.

Everything happened so quickly after that. They unloaded us after we landed. My son was still trembling uncontrollably, he couldn’t cry because he couldn’t, and the quiet was deafening. This is the story of a moment when I prayed in a way I had never prayed before. ‘Please, God, assist him.’ Please assist me in being calm. Overcome Quinn and me with serenity and comfort. Lord, take away his agony and fear and help him overcome this. ‘I’m confident you’ll be able to handle it!’ I recall saying the phrase “please God” repeatedly in my head. I couldn’t help but pace about like a crazed woman. I was powerless to stop my baby! The image of his little body shaking and the noises he was making will stay with me forever. It’s a terrifying loop that, if I let it, will play over and over again. They gave him an Ativan shot to control the seizure, started an IV, and performed a CT scan to rule out a stroke caused by his immobility.

The first time we went, we stayed for four days. My daughters were having a hard time being without me and not knowing what Quinn was up to. They’d never been separated from their father for so long, and I hated having to leave them. My baby, on the other hand, required my presence. He needed me to be there for him and to support him. Thankfully, my father, stepmother, and sister rallied to assist the girls. Our friends and family have been wonderful. Quinn experiences Todds Paresis as a result of his seizures. As a result, his right side becomes practically paralysed. It took him three days the first time to restore strength on that side. We were given a new medication regimen that included Keppra and baby aspirin in the hopes of controlling the seizures.

Courtesy of Michelle Salas

From that moment on, I was terrified almost all of the time. I’m just waiting for this beast to show up. Approximately once a month, he would have a cluster seizure. His clusters were made up of 2-4 seizures that happened one after the other. Since then, he has been hospitalised multiple times. He’s also undergone many EEGs, MRIs, and a second CT scan. Because he continued to experience breakthrough seizures, we had to increase his Keppra dose several times. Quinn began having seizures at home one night in September of this year. We took him to CHLA, got things under control, and were released after 24 hours. That night, he began to seize once more. We dialled 9-1-1, and an ambulance was dispatched to transport him to the nearest hospital. His convulsions stopped on the way there. They stated there wasn’t much they could do because he had only been admitted to CHLA the day before and had completed all of the tests.

We were sent back to our homes. He started seizing again a few hours later. We didn’t have any emergency medications on hand because no pharmacy in the region had them in stock when we tried to get them filled. I was on the phone with 9-1-1 after three minutes of his seizing. Quinn was still seizing four minutes, five minutes, six minutes, and seven minutes had passed. I was giggling uncontrollably. I tried to remain cool for him, but I couldn’t. My little one! While I was on the phone with the dispatcher, my husband was sleeping next to him, attempting to console him. The ambulance was on its way, and a chopper was on its way to transport us back to CHLA.

‘Please, God, make it stop.’ I was praying at this point. I know you’re capable. Please don’t kidnap my child.’ Time and time again. The EMTs arrived 11 minutes later and gave the patient Ativan. His convulsions subsided. My spouse accompanied him in the helicopter since I couldn’t bear doing it again in my current state. Quinn needed a rock and a calming presence, which was not me at the time. We were hospitalised, and his seizure medication dosage was upped after another MRI. Four days later, we were released. He hadn’t had any seizures, but his paralysis remained, and we were unsure what to anticipate – 14 minutes is a long time to seize, and it was all in God’s hands.

Courtesy of Michelle Salas

Quinn has yet to experience another seizure almost five months later! I’m going to put it down to God. Daily, I still struggle with anxiety, and I have to resist the gloom of the black hole that threatens to suck me in. My son, on the other hand, is seizure-free and doing well. He goes to physical therapy, occupational therapy, and vision treatment six times a week, and he’s becoming stronger by the day. He has incredible resiliency, and I am proud to be his mother. I’m no longer engaged with God. I genuinely appreciate him regularly for providing us with Quinn in his current form. When we’re out and about, we get a lot of looks. Also, illiterate people tend to say things they shouldn’t. But I strive to seize those opportunities, respond gracefully, and turn them into instructional moments.

Quinn is nothing short of a miracle. In his 17 months of existence, he has taught me more than I had learnt in my previous 29 years. He’s brought our entire family closer together, and he’s made my religion stronger somehow. I know that God is guiding him through this life and that he is destined for greatness. I’m looking forward to seeing him in action. I’ll keep reaching out to those on the same path as myself. And I always try to bring up hope because I’ve learned that there are many more days filled with light despite how black some days can be. It is critical to raise awareness. The importance of inclusion cannot be overstated. We need more love and acceptance in this world, and I am grateful to have Quinn in our lives to help us teach that.

Courtesy of Michelle Salas
Courtesy of Michelle Salas

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