Trusting the “Alpha & Omega” when the Alpha is missing

When my son was born, he was perfect. Healthy. Beautiful. He had ten tiny fingers and ten tiny toes. He was quiet when he was born, but he cried when he was supposed to. Held my pinky when I placed it in his hand. Looked up at me with those wise eyes. Fed like a champ. He was perfect…And I knew I was blessed to have a healthy child. We had survived labor with almost no complications and I thought we were in the clear. I remember when they did the heel prick in the hospital. You know, the one for the typical newborn screening. It was 1 or 2 o’clock in the morning. He didn’t even cry. Even the nurses were impressed…My fierce little lion…”Thank you” the nurse said cheerfully. “You should get the results back in a few weeks. It normally comes back all ok.” And with that, it didn’t cross my mind again…until a couple weeks later. It started with a phone call. A vague, terrifying phone call. I was told something showed up on the newborn screening, an “abnormality” with his blood. I needed to take him to the specialist. The date was 4 weeks away. They would send me a package of papers to fill out for the specialist..and no they couldn’t confirm what was wrong… There were a thousand blood disorders out there ranging from no problem to deadly and no one would tell me anything…I was devastated. In this moment my heart shattered. I had never felt a fear like this in my entire life. And to make matters worse: I was alone. Well 4 weeks later, after the doctor rescheduling his appointment twice and then me demanding my son to be seen, and still not receiving any answers; I loaded up my son and we drove almost an hour to the specialist. The entire way there I was a nervous wreck, already feeling the sting of tears in my eyes. Pediatric Oncology and Hematology….The name itself shoots fear through my heart…”Good Afternoon”. “Fill out these papers please”. “Sit here”. “Wait here”. More papers. “Sit here, they will draw his blood shortly”. I was numb. I held him tight and put on a brave face. Not the first. And not the last. She called us back, all business. “Sit down in the chair. Hold him in your lap”… Waaaiiittt! I wanted to scream! She was so calm, professional, cold almost. Didn’t she know I was terrified? That not all of us do this everyday? Didn’t she see how tiny he was? Didn’t she know being a new mom is scary enough? A single mom at that!—Of course she couldn’t have known that last part…I sat. I held him. And I braced myself…. I wasn’t prepared. How could you prepare yourself for this? Holding down his tiny arm, no bigger in width than 2 of my fingers. Watching the needle hit his vein. And the worst part? Hearing him scream. I had never heard that immense sound of pain come from him in his short 6 weeks; and if I thought my heart had been shattered previously, that was nothing close. I held him down. He screamed…I kissed his head. He screamed…I fought with every ounce of strength in me to hold back the tears. Still screaming…I cursed his father for not being there. Still screaming…I tried swallowing the lump in my throat so I could speak, but to no avail. He’s still screaming…I pray to God that my baby will be “ok”-whatever that means. More screaming… She finally withdraws the needle. I comfort him, trying to soothe his sobbing…”I didn’t get enough blood the first time” she informs me. “I have to do it again”….So we hold down the other arm. My son, my beautiful 6 week old infant, already screaming because he knows whats coming…

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When we finished, we went up to the next floor. Here we sat and waited…and waited…and waited for the doctors to call us back. I’m numb. I’m silent. And so is he…He’s exhausted.

The doctors call us back, ask questions, do the physical exam. Lion baby lets them. He doesn’t cry. He doesn’t move. He just stares off blankly…and I try not to do the same. After what seems like forever, answering the same questions over and over; explaining a million times that no I do not know the paternal side’s family history, he’s not here, and that wasn’t exactly something we talked about…they finally explain the diagnosis.

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My son has Alpha Thalassemia Minor. The easiest way for me to explain it here (and skip the half hour of diagrams and explanations from the doctors) is this: Blood is made up of 4 types of globins; the dominant types being Alpha and Beta. My son’s blood is missing some of the alpha-globins. It’s genetic, meaning at least one of his parents passed the gene(s). What are the effects? Well, it’s hard to know exactly at this point. We have another appointment soon to check his levels. However, being that my son has the minor form (and not the severe form), he will not need the more severe forms of treatment (blood transfusions, etc.) In simple terms though, alpha thalassemia affects the hemoglobin and reduces its ability to transport oxygen. The red blood cells are smaller than normal and alpha thalassemia may lead to anemia (not the iron deficient kind).

So where do we go from here? It’s a question I asked myself that day in the hospital and ask myself still. I still do not know what complications this may bring for my son, but what I do know is this: I am still BLESSED. I am blessed because: I am able to hold my child close. He is happy, and honestly healthy. I am blessed because my son carries the MINOR form.

I walked out of the Pediatric Oncology and Hematology floor that day…and as much as my heart ached for my own child, my heart ached for the children and parents sitting in the patient rooms that we passed. They didn’t have the opportunity to walk out of there that day, to get in the car, to drive an hour back home. They didn’t have the “blessing” of being told their child has _________MINOR. I walked out of there holding my child…the thought that some people don’t, tears me to pieces as I write this.

In all we do, there is always a blessing in the storm. No matter what hell we have been through, we can always lean on God and trust his plan…My son may be missing some alpha-globins, but that doesn’t mean anything will hold him back; and we will never stop trusting the “Alpha & Omega”.

-Alanna

❤ ***My son has the minor form of the disease; however there are children and families out there with the major form who are experiencing much worse than we are.The only cure for Alpha Thalassemia is bone marrow transplant. I would really like to encourage everyone to look into becoming a bone marrow donor. For this disease and so many others, you might just save a life.*** ❤

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