Looking after a newborn is challenging enough without adding a chronic illness to the mix. Well, that’s exactly what happened to us. It happened right as we felt like we were getting back into some kind of rhythm…
Three to four days after Chinese New Year my wife started to complain that chewing food was hard. She also felt like one of her eyelids was drooping. Thinking it might be the result of tiredness and general depletion (nutrients she eats goes to the baby first, and she gets what’s left over), we did our best to let her rest and boost her food intake.
But, her condition didn’t improve, so we went to the doctor who came so close to diagnosing her. She mentioned Myasthenia Gravis (MG), but my wife’s muscle strength looked good at the time (strength can come and go with MG). So, she gave us some multivitamins, and we went home happy that it wasn’t MG. We had read about MG, and were hoping it was something else.
My wife seemed stable for about a week, and then it deteriorated fast. Overnight she had an episode of hardly being able to get up out of bed. Then, she lost strength and fell face forward on the street when we were trying to visit a doctor (who was fully booked).
At this point, we found out which hospital had a neurologist and went straight there. She was diagnosed with MG, and it was so bad that she was put on rescue medication, IntraVenous ImmunoGlobulin (IVIG).
Life With A Wife With Myasthenia Gravis
That first week was tough. My wife was in hospital for the IVIG treatment, so there were daily trips to the hospital. Added to that, everything that my wife used to do now had to be done by my mother-in-law (who flew over to help), and myself. The baby could be breastfeed during hospital visits, but needed to be bottle fed by us the rest of the time. And, I had to get her to sleep despite her missing her mother. Mornings were spent doing housework I didn’t have time to do the night before, and any chance of getting work done was gone.
It’s getting better now. My wife is responding well to treatment and is back home. She still isn’t back to her energetic self, and is quite limited with how much she can do in a day, but is getting better. For now, I have to drive her wherever she needs to go, because we feel it’s too risky for her to drive herself. We’re looking forward to her being back to full strength and ability…
What is Myasthenia Gravis?
Myasthenia Gravis (MG) is an autoimmune disease where the immune system attacks your own body. In this case, it attacks the neuromuscular juncture (a.k.a., the connection between the nerves and muscles). You can probably guess that this results in progressively losing the ability to use your muscles. And, that includes critical muscles such as the ones you use to breathe.
MG is the scariest autoimmune disease I’ve ever encountered. Watching my wife go from being high energy to struggling to eat and use her arms was difficult. By far the most upsetting was her telling me that breathing was difficult. Untreated, MG can be fatal.
Fortunately, it is treatable, but with varying success. Some have lifelong trouble. Others, do well with medication, and some do manage to get rid of it completely despite there being no known cure. My wife’s MG is probably caused by a thymoma (tumour in the thymus), and we’re hoping that a future operation to remove it will put her on the road to full recovery.
Why Did it Happen?
Nobody knows exactly what causes autoimmune diseases. My wife has had a thymoma (tumour in the thymus) growing inside her for a years, so it’s probably been there lying dormant for years.
While the root cause isn’t known, autoimmune diseases tend to strike when you’re under a lot of stress and a sudden change in diet (or poor diet). Having a new baby tends to be a stressful time (especially with baby number one), and we tend to suddenly eat party foods round new years. And yes, we ate quite differently over Chinese New Year, and the MG flared up round that time.
Pay Attention to the Warning Signs
If you have the telltale signs of Myasthenia Gravis, then we recommend seeking medical help immediately. As mentioned above, MG is more likely to flare up during stressful times, and some symptoms look a lot like the exhaustion you may feel with a newborn in the house. Here’s a quick list of possible symptoms:
- Droopy eyelids
- Double-vision
- Difficulty swallowing or chewing
- Difficulty lifting objects or walking up stairs
- Facial paralysis
- Trouble talking (e.g., slurred speech)
- Excessive tiredness
NOTE: You don’t need to have all of them. Early on my wife had only the droopy eyelids and difficulty chewing. Everything else was fine.
Also, MG is frequently misdiagnosed as something else, because it’s rare and the symptoms are similar to other diseases. So, if you think it could be MG then we highly recommend going to see a neurologist.
We’re Still Incredibly Grateful
Despite the struggles of MG, we have lots to be grateful for. We’re very grateful for the following:
- We reinstated my wife’s health insurance last year, which covered the hospitalization. The IVIG medication alone cost close to $12,000 USD, so we couldn’t have afforded the private hospital bill without the insurance
- It happened when our baby was 3-4 months old. She’s old enough that she can handle Mama’s absence well, but not yet at the stage of separation anxiety. So, she handled the drama well, and with a frequent smile
- My wife happened to have physiotherapy appointment about a week before hospitalization. A chiropractor at the therapy centre recommended seeing a neurologist if things got worse. MG frequently gets misdiagnosed, so it was very good to be at a hospital with the right expertise and experience. This tip probably saved her from ending up with a feeding tube and ventilator (she was days away from reaching this point)
- A good friend just happened to work at the hospital with a resident neurologist, which is how we knew where to go so quickly
- My mother-in-law’s flight just happened to arrive the day she was admitted to hospital, so she was there pretty much when we needed her
- We have wonderful family and friends who supported us in all sorts of ways. We had people around the world praying for us, doing research on MG, while those more local helped with meals, and transporting stuff. Some friends even donated breast-milk for our baby
- There are kind and helpful strangers. Thanks to a breastfeeding advocacy network, we got more than enough breast-milk to keep our baby fed during this difficult time
All in all, we’re very blessed. Had any one of the items above been missing, then things could have been much worse for us. The road to recovery will be long, but we’re grateful and hopeful for the future.
Photo credit: Image by cor gaasbeek.
