“The last thing we expected to learn during our 16-week anatomy scan was that our unborn baby boy, Michael, had a noticeable defect of his heart. This ‘defect’ would be identified at a following Cardiology appointment as Hypoplastic Left Heart Syndrome, HLHS for short. Little did we know, this was the first stop on a trip of the unknown. The start of Michael’s heart journey began with multiple specialty appointments and fetal echocardiograms. The many ‘echos’ were done to ensure no surprises would pop up before Michael was born. We were given three options from the start. These are the only available options for HLHS at this time. The first being termination of pregnancy, second was palliative care, and the third was a 3-step palliative surgery option, as there is no cure for HLHS. It wasn’t hard to decide which option we would choose. We didn’t believe in abortion, and who am I to take away Michael’s right to fight? So, we chose the surgeries. He would need three at the least. Norwood, Glenn, and a Fontan. With Michael having only a 50% chance of making it past the first surgery, we were ensured the next two procedures are far less complicated and have a higher success rate. Scary, right?
What we didn’t know, is just how hard our son Michael would have to fight. The rest of our pregnancy was a breeze despite the appointments. Our 38-week appointment came and lo and behold, I had high blood pressure. Our doctor, Dr. Malik said, ‘I’m going to give you 10 minutes and then I’ll recheck you. If it’s still high, I will have no choice but to induce you… Today.’ No pressure, right? Those 10 minutes came and went and the next thing I know we are being sent to labor and delivery for induction. Everything was going smoothly once the process was started except for one little thing. I wasn’t dilating. This was putting stress on Michael, and when morning came, I was faced with the option of a cesarean section. All I remember saying was, ‘Please do whatever you have to do to make sure Michael is safe. Do the c-section, I don’t care!’
Within thirty minutes I was being prepped and rolled down to the operating room for my spinal tap. Steven, Michael’s father ,was left in the room with our parents to get prepared and would join me once the doctor was ready. As nervous as we both were, there was a sense of peace. Today is the day we’d meet our darling Michael. On August 11th, at 6:50 a.m., the c-section was nearing an end and they were seconds from pulling him out. One last tug and all I heard next was the NICU nurse say loudly, ‘I have to take him and run!’ We didn’t hear any cries, and we were worried. Was he okay? Was he breathing? We would know nothing until Steven could go see him. He was perfect. Ten fingers, ten toes, a head full of black hair, and no intubation necessary. I would finally get to hold him the very next day. He was so tiny, and it was just magical.
During the first few weeks of Michael’s life he had various tests done to ensure he in fact had HLHS. Twelve days came and went, and he was finally ready for his first open heart surgery. We were surrounded by family while waiting and I think that’s what made the wait so easy. We would be called with updates every hour. ‘They’ve gained access.’ ‘They’re placing the sano shunt now.’ ‘He’s off bypass and they’re waiting to see if the shunt is working.’ He was doing great. But nothing prepares you for what you will see following the surgery. My baby didn’t look like my baby. He was lifeless. Blue, but pale at the same time. He was intubated, with wires coming out of him every which way. They had to leave his chest open. Machines beeped and alarms were sounding constantly. You know that feeling where you’re so shocked you could cry, but nothing comes out? That’s where I was. I wanted to scream. I wanted to cry. I was stuck between wanting to crumble to the ground in disbelief that I chose this for him, and wanting to smile because my baby made it.
He was here, despite what he looked like at the time. He was fighting. Those feelings only lasted for a short time. Michael coded. Full cardiac arrest. Luckily, his surgeon was right there and reacted extremely quickly. I, as well as Steven and my in-laws, will never forget watching Michaels surgeon, Dr. Shillingford, squeezing his little heart between his fingers, trying to get it to restart. What felt like an eternity went by. My parents and sister rushed back to the hospital in fear of what they’d see when they arrived. He came back. Without any further medical intervention, he came back. But the worst wasn’t over. The next morning he would be taken for an exploratory cath procedure. They found no cause for the cardiac arrest. With the high possibility that he’d code again, we opted to place him on Tandem Heart (Ecmo) to allow his body and heart to rest. The immediate color change after placement reassured us we were making the right decision. He remained on Tandem for five days before they could wean him off successfully. He was a trooper. Despite everything that had happened in the beginning of his CVICU stay, he was discharged at 6 weeks old. He needed oxygen, and an ng tube for feeds, but he was home!
Following Michael’s first surgery and discharge home, we learned our new normal. We had many doctor appointments to go to. Echo’s, Ekg’s, Blood work, therapy appointments, etc. Since his first surgery life has been anything but easy. He’s had more open-heart surgeries, cath procedures, a gtube placement, ladds procedure for intestinal malrotation, a cleft palate repair, and neurosurgery due to strokes. And those are just the main procedures.
When Michael was around 13 months old, a fellow heart mom, Emily, reached out to me. Her daughter had Kabuki Syndrome, as well as HLHS. She had seen a few of my posts in the heart group and realized Michael had a lot of the same features her daughter Olivia had, that were extremely common with Kabuki Syndrome. Upon our conversation I thought, ‘There’s no way. She’s crazy. I would know if he had a genetic syndrome.’ But after looking it up and seeing the other children’s pictures, we decided it was possible and made an appointment with a geneticist. During the appointment they diagnosed Michael clinically due to his physical features. Low lying ears, long outer eye fissures, long eyelashes, arched eyebrows, persistent fetal pads, clubbed fingernails and toenails, heart defect, the list goes on and on. He had bloodwork sent off to test for one of the two gene mutations associated with Kabuki, the KMT2D gene. Within two weeks we had a positive diagnosis. Michael had Kabuki Syndrome. It was like everything he had been through, everything he had going on, finally made sense. It’s all related to Kabuki.
We are often asked, if we had known Michael would have Kabuki Syndrome, or any syndrome in general, would our decision to pursue life for him, been any different? The answer is and will always be, no. Michael is who he is because of Kabuki Syndrome, and we love him no less than we would if he didn’t have it. His life is going to be hard. He is already globally delayed and at a 4-6 month level at 2.5 years old. But he will do everything a typical child does, in his own time. The delay just makes the milestones that much sweeter. The only thing I would ever change is how much he goes through and how hard he has to fight to live. Something we take for granted every day. And since I know it will probably be asked, yes. We are extremely close with Emily, the girl who reached out to me about Kabuki Syndrome. We talk almost every other day. Although she recently lost her sweet warrior angel, Olivia Grace, I know our friendship will always be close. We are linked for life because of this crazy special needs world, and her family will always hold a special place in my heart.
One thing no one tells you when you start this journey, is how much will change when you have a terminally ill, special needs child. It’s not just your life or your friendships that change. You as a person change too. Your mentality changes. You are no longer just a parent. You’re an advocate. You are your child’s voice. You are there to make the easy decisions, and the gut-wrenching ones. To say this life has been hard would be an understatement. But it’s been worth every tear and unknown that has or has yet to be thrown at us.
Michael’s story has reached countless strangers. It opens their eyes to the world of specials needs and what our children go through. Michael has taught our family what it means to love, and be loved. He’s taught us how to fight. How to remain humble. He’s taught us that different, is okay. Like many special needs parents will tell you, there comes a time during this journey where you have to grieve the life you thought you’d have with your child. But you also have to be grateful for the life you’ve been given. I’d like to say I’ve accepted this special needs life pretty well. But that doesn’t mean that when I see an able bodied 2-year-old at the park running, swinging, speaking full sentences, all while eating a cheeseburger meal, I don’t get a little upset. I’m quickly reminded after looking down at Michael in his stroller, playing with his favorite crinkle toy, smiling ear to ear, that he to, in his own time, will be that child. Running, swinging, and eating a cheeseburger.
In short, we’ve learned that life has a funny way of giving you everything you never thought you’d want or need. I am so thankful for this crazy life I get to call mine. And I’m so excited to see what milestone Michael conquers next. Will it be sitting? Eating? Or saying Dada? He is our Kabuki warrior, and he is the best thing to ever happen to us.”
This is an exclusive story to Love What Matters. For permission to use, email Exclusive@LoveWhatMatters.com.
This story was submitted to Love What Matters by Ashley Raulerson of Callahan, Florida. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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