Our fourth pregnancy was met with great excitement and anticipation by my husband Mike and I, as well as our three young children Anthony, Jacob, and Mary. We longed for another baby and were over the moon that we would be entrusted with another soul! The pregnancy was a normal one and all was well, or so we thought. What we didn't know was that our newest little baby, who had a genetic disorder only described by doctors 18 times ever in the medical literature, was about to change our lives forever.
It was immediately after birth that we knew something was wrong. The baby was pale white and limp. The midwife quickly started bagging the baby and before we knew it the room was flooded with hospital staff, all trying to resuscitate this little life we had named Dominic. The NICU nurse started calling out abnormal features such as "small, low ears," and "flat bridge of nose." It was at that moment I knew something was wrong. You see, I am a pediatric physical therapist and I know just enough to recognize the signs of a genetic disorder. Dominic was whisked away and I was left in the bed, shaking and scared.
The next 5 weeks were the most trying of our lives thus far. Dominic had his ups and downs, was intubated and on a ventilator to maintain life. He had a surgery to fix his malrotated intestines and had to get a g-button since he could not eat by mouth. He had several MRI's of his brain which showed a very abnormal, small, simple brain. The doctors told us we would have to bring him home to die.
To everyone's surprise however, he puled through. He eventually got stronger and was able to breath on his own. After 5 long weeks we brought him home! It was the most joyous week of our family's life! The night before we brought him back to the hospital (6 days after we brought him home), he stopped breathing 8 times. He was connected to a pulse oximeter to monitor his oxygen levels and heart rate and an apnea monitor that would alarm when he went without taking a breath for 20 seconds. This was the worst night so far so the next day he was re-admitted.
It was determined he was having seizures and terrible episodes called "dying spells" where he would pass out and stop breathing. The decision was made at that point that he needed a trach (an artificial opening in his neck) to open his airway and help him breathe. After the surgery however, the spells continued and he regularly would stop breathing. He was placed on a ventilator which he would remain connected to for over a year. After 3 long months in the hospital, we were finally able to bring our baby home again! This time however, we weren't just bringing a baby with special needs home, we were bringing a mini ICU home. He had several machines that went with him everywhere, including a ventilator which breathed for him, the pulse ox, the anea monitor, the feeding pump, an oxygen tank, and a suction machine. We also had to always be prepared for an emergency where the trach would come out or he would stop breathing. We carried extra trachs and an ambu bag incase he needed to be resuscitated. We now had nurses in our home helping us. Our privacy as a family was destroyed as we learned to live with these strangers in our home. I remember the heart break of seeing a woman I didn't know holding my baby, taking care of my baby, cuddling my baby so I could tend to the other kids and the needs of the home. I felt like a visitor in my own home.
Through all of these extreme trials, Mike and my faith in God grew indestructible. There was nothing we could do but trust. Even amidst heart break and sorrow, pain and sleepless nights, our Lord taught us to trust Him.
Eventually, we got used to our new normal. The other kids adjusted to life with Dominic, life with nurses and alarms, and therapists in and out. We figured out how to remain strong, to keep the faith, and not to let the balls drop.
Sometimes though the balls did drop. I remember one Thanksgiving morning, about 6 am, I was in the kitchen making pies. I heard alarms sounding so I ran to his room to find him limp and gray. I grabbed the ambu bag, applied oxygen, and started breathing for him. I went into emergency mode, which we've learned to live with always lurking in the background. The numbers on the pulse ox showed he was almost gone. His blood oxygen was at 14%. Either we react, or he dies. We did what we do and brought him back to us. Afterwards I went back to finish my pies, shaking horribly and remember thinking life isn't supposed to be like this. How do I go on making pies when I just saved my baby's life? But I did. Life doesn't stop. Mike and I hugged and continued on.
These events have been speckled throughout our life with Dominic. Tragic events. Frantic trips to the emergency room. Emergency surgeries (12 in all). Long hospital stays with the other children hanging in limbo, going from place to place, trying to make our "normal" as normal as it can be.
Through all the stress, the trials, and the tears I can say we wouldn't change Dominic or our life. I don't pray for him to be cured because I know he has a greater purpose than we understand. A wise, old priest told me once that God doesn't make mistakes and I believe that to be true. I pray instead for his life to be one that completely glorifies God. That through him we can all become better people who love and serve, and wear ourselves out for others. That through him people can come to know God and to let go of hurts and pains. His life is not without purpose. I would say in fact that his sufferings, his pains from surgeries and recoveries, are more fruitful than all the good works you and I could perform. By his inability to hate, he teaches people how to love.
Dominic is now 4 years old and has overcome so much. Still, he can not talk, can not walk, can not sit longer than a couple minutes. He can not eat and uses a ventilator to breathe 1/2 of the day. Oh, but he can smile. He can love. He can fuss and yell when his physical therapist puts him in standing. He can yell louder when she makes him walk. He can let his speech therapist know when he is feeling like a toddler and doesn't agree with any of the fun activities she brings. He can tell us when he is happy. He laughs when we read him books.
From the doctor who told us to bring him home to die, to now being able to make a choice between two pictures and hold his own head up, he has overcome monumental odds. He has so much potential locked in his little broken body, we only need to let it out. If we are granted this scholarship, we plan to use the money to pay for hippotherapy lessons. It is my hope and the opinion of his physical therapist that therapy on a horse will strengthen him and may eventually lead him being able to walk with the assistance of a mobility device. Also, this therapy will help his mind to awaken and make him better able to communicate with and participate in his environment.
I thank you for your consideration and faith in this little boy who gives big hope.
Dominic's mom,
Chasity
Chasity, this is beautiful. You are one awesome mom!
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