The Facts, the Mystery and the Return of Good News
Maternal lupus (also known as neonatal lupus) can lead to congenital heart block (disruption of the signal impulse) due to the presence of anti-Ro and anti-La maternal antibodies that crossed the placenta. Recent research has actually narrowed it down so a woman with lupus can be screened before getting pregnant and know if she is at risk of her baby developing it.
But screening was not available for me when I was pregnant with AJ, and even if it was, I had three years to go before I would be diagnosed with lupus.
Heart block can be mild and almost undetectable (level one) to severe (level three). It can be progressive, and children don’t usually survive with level three.
Naturally, my fear was that my son was level one at birth and things went undiagnosed, just like my lupus did. My fear was now that doctors detected a missed beat in his rhythm, he had a condition all along and now it was getting worse.
I was terrified what might happen if his condition progressed. I contacted experts and researchers in New York to learn everything I could about undiagnosed heart block. I became relentless in my search for answers.
I would go into his room at night to watch my son sleep and check on him. This was not for one more kiss and to fix his blankets, but rather I felt compelled to watch him breathe to reassure myself that his heart, despite its slow and unsteady beat, was doing its job.
I actually sat in the dark by his bed and put my ear to his little chest. I heard the slow beat and then I heard the pause; the skip in his slow rhythm, then an extra beat like it was trying to catch up.
I needed answers. I needed a miracle.
My good news (my miracle, really) is that after a year of tests, and stress and fear, in March of this year, his cardiologist conducted a 24-hour monitor test and the heart issue my son clearly had a year ago could not be detected.
It was heard in January, gone in March. Again, the doctor had no great explanation other than my son grew out of it, but the doctor could not explain the sudden speed of the recovery. He called him my miracle baby.
Child of My Heart
I, of course, blamed myself for whatever heart issue AJ had. I feel maybe there is something happening within him the doctors are not seeing and it is lupus-based in origin.
I blame lupus and what I may have passed on to my children. It took me decades to get a diagnosis and I honestly fear for all of them, not only about getting lupus, but the lack of knowledge about it within the medical profession.
You spend your time wondering if it is it really OK, or if the doctors are actually missing what is really going on? That is how it is for me on a daily basis and that is how I feel about AJ’s heart condition that threatened his life then suddenly vanished.
When I asked my son’s pediatrician about the possibility of lupus being the cause, he at least admitted his knowledge about lupus is limited. We later learned my own blood work done when I was first diagnosed with lupus did not indicate I was at any risk of having a baby with heart block.
So, other than bad luck, there is no solid explanation of why my son developed a heart issue, or why it resolved itself. Now we wonder, are they missing the connection?
Is it lupus related? Will it return?
If you are a lupus mom, you probably share in my feelings of desperation and worry. Here is what I have to share with you:
- If you are pregnant or considering it, educate yourself on all the risks and find a high-risk OBGYN doctor who has a solid knowledge about lupus and checks for presence of anti-Ro and anti-La maternal antibodies.
- Get any symptom of lupus you discover in your children checked by their doctor and if your gut says the doctor does not appear educated about lupus, get a second opinion from one who is.
If you are a parent with lupus, you must be an advocate for your child’s health and medical conditions too. Ask questions, keep your faith, and never let small, odd little symptoms get brushed aside.