Our story starts when I was awaiting the birth of my fourth child, now a delicious six-year-old named Shloime. I had the CMV virus while I was expecting, but I had no idea at the time. I simply thought I was particularly tired. 

At the twenty-week sonogram, the doctors predicted that the baby would be born with Down syndrome, because he had physical characteristics that seemed to point to that diagnosis — eyes far apart, echogenic bowels, and slow growth rate.

But two weeks later, they told us no, it’s not Down syndrome, after all.

They didn’t follow up on the worrisome symptoms. Even though the baby wasn’t growing, the doctors didn’t seem too concerned. In hindsight, they should have immediately advised me to do a TORCH test — that’s a test that checks the baby for several infectious diseases that can affect the baby.

Obviously, Hashem didn’t want us to know about this.

Still, with the worrisome symptoms, we approached this birth differently. It was a holy time, with a lot of tefillah and Tehillim. When I went into the hospital to have the baby, I was ready for whatever would come. 

There was an entire team ready — and then the baby was born looking perfect! He had a very cute face, a big appetite, and externally, he appeared fine, aside from having a slightly smaller than normal head.

The baby was born with two symptoms of congenital CMV: He had microcephaly (a small head) and a few days later, he failed his hearing test in the hospital. This was a chesed from Hashem, because many babies born with congenital CMV pass the hearing test initially, and only lose their hearing later. But because we found out right away, we were able to start getting treatment immediately.

CMV, when it shows up in adults, is a typical virus with flu-like symptoms. When it occurs during pregnancy, however, it can affect the unborn baby. A baby born with CMV is considered to have “congenital CMV,”  CMV from before birth.

Most babies born with this condition are fine, however some have medical challenges throughout their lives. These include hearing or vision loss, developmental or motor delays, microcephaly (small head), and seizures.

We didn’t receive the diagnosis right away. With congenital CMV, there’s a twenty-one-day window in which it’s possible to test if the infection was present during the pregnancy, allowing you to discover whether or not the baby has congenital CMV. It’s also the time frame in which you can start the baby on medication to stop the hearing loss from progressing.

At the time, though (six years ago)  testing for congenital CMV wasn’t part of newborn screening, and I waved away the failed hearing test. Many babies fail the test, and there’s no reason for concern. The hospital wasn't concerned either, despite the many alarming signs through pregnancy and after birth. It was my pediatrician who said, “We have to find out what the hearing loss is all about — is it genetic? Is it CMV?”

We finally had results — yes, it was CMV. But it was too late to tell whether it was congenital or not.

Someone I worked with was involved in Chaim Medical. She put me in touch with Dr. Gail Demmler-Harrison in Texas, a renowned expert in congenital CMV, and got me an hour-long free consultation. I wanted to pay but she insisted that the doctor wanted to help voluntarily!

Dr. Demmler-Harrison gave me a wealth of information on medication, doctors, treatments, and trials in my area. She referred me to Dr. Lorry Rubin, an expert in pediatric infectious diseases, and the baby was prescribed a brand-new medication to be taken for six months. It was so new that it wasn’t available as a generic medication, just as a brand name. 

We had to keep coming back to the doctor to check that it was working, and that there were no negative ramifications, since the medication was very strong. Baruch Hashem it worked, and it stopped the progressive hearing loss, so now our son has one “good” ear.

Another interesting thing Dr. Demmler-Harrison told us is that every baby in America is given a newborn screening at two days old, in which they take a tiny drop of blood and dry it. They keep that blood spot at the Department of Health for twenty to thirty years, and it’s possible to retrieve it and have it tested for infectious diseases. 

We did that — we retracted the blood spot and tested it — and it came back positive for congenital CMV. That was very helpful to us as now we could identify with certainty the cause of the hearing loss and delays, and we didn’t have to worry that it was genetic. We’ve actually helped many people who had never been able to verify their child’s diagnosis, by telling them to do the same thing.

I was determined not to keep the baby’s condition a secret. If people are aware of my reality, they can support me and give me chizuk. I don’t feel the need to pretend that everything’s perfect. 

I’m more than happy to share my story with anyone who wants or needs to hear it. Not everybody feels that way — I remember one speech therapist telling me, “I wish you could talk to some of the other parents I work with. They’re so embarrassed. They think this would never happen to their sisters-in-law.”

I feel so bad for people who feel that way, because they have a double challenge: the issue itself, and then, on top of that, a heaping dose of embarrassment and shame. I never kept the hearing loss or diagnosis a secret; on the contrary, I told people immediately. There’s nothing to be ashamed of.

One unexpected response was that some of my friends heard the news and started crying for me. And then I had to calm them down! It felt strange at the time, but looking back, I think it was their way of showing support — and after all, what should they have said?

There’s one more advantage of being open about your challenges, and that is that people really understand if you’re not at your best. If I’m late to a chasunah or can’t bring any refreshments to the Chanukah party, everyone understands. They know I’m dealing with a lot, and they lower their expectations.

This was important in the year and a half after the baby was born. We were running from doctor to doctor, the full range of the “ologists” — radiologist, neurologist, and more. There were so many things we had to check out. We landed in the hospital twice. 

Then there was the feeding — Shloime didn’t have great muscle tone, and he had to eat literally every hour, maybe an ounce at a time. I have no clue how I did it. He was also very sleepy from medication, and wasn’t strong. 

We were running to various therapy appointments. There was a lot of fear about Shloime choking as he grew up and started eating regular food, so a feeding therapist worked on that. He also needed PT and OT — he was falling a lot, had low muscle tone, didn’t walk for a long time… Baruch Hashem, we had amazing therapists, and by now, he’s exceeded all expectations and is doing so well!

Eventually, Shlomie received implants to help him hear — without them, he only has minimal hearing in one ear. I should have pushed for the implants right away, but I didn’t know enough back then — the city said he would only be eligible from a certain age, so we waited.

Nowadays, the implant is a small round piece called a Kanso. It sits under Shloime’s koppel and you can barely see it. It’s not an issue at all.

Over the years, I’ve found additional resources to help us. Somehow, things get ironed out; Hashem sends ideas, solutions, messengers. There’s a foundation called First Hand Foundation, which covers costs of medical or therapeutic equipment up to three times for a child — they’ve given us close to $10,000 worth of equipment so far! 

It’s so gratifying when I can use my knowledge to help others in need. I always offer to help anyone who needs assistance with applying for this grant.

We’re still running to a lot of therapies these days, too. I make sure to treat my other kids to extra prizes and treats so they don’t feel resentful of all the hours I spend taking Shloime to therapy and all the attention he gets. 

In general they understand. I try to make sure I greet every child with a smile and give them ten  minutes of attention on their own each night, no matter how stressful and busy it’s been.

Now I’m taking Shloime for cranial therapy, which I think is helping with his growth. People ask me, “You believe in cranial?” I don’t “believe” in anything, only Hashem. I simply try to find the right shaliach. Before I go into any therapy, I say, “Please, Hashem, I’m trying to do the right thing as a parent, the rest is up to You.” And I prefer working with therapists who believe this, too.

Twice, I saw clearly how Hashem is the One in control of my child’s progress. Both times, I received a call from the school informing me that he wasn’t doing well, and I didn’t know what to do. 

I don’t cry easily, but both times, I davened a very heartfelt tefillah and cried out for help — and then, shortly after, I received another phone call to let me know that he was doing much better.

My message to other mothers? No one wants to have a child with special needs, but if that’s the challenge given to you, know that there is SO much support out there. There are so many parents on the same journey. 

I also notice that the siblings of a child with special needs are more mature and more giving.

Life isn’t perfect — it’s not meant to be. Many people I know struggle to reach this elusive perfection, but that’s not our goal in This World; our goal is to achieve our mission. And all challenges are temporary.

Most important, always, always, focus on the positive. There is so much to be grateful for!

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