Sickler

One of the nurses on Female Ward wants me to see a friend of hers, who is having bleeding after delivering a baby recently. It sounds normal to me, but I tell her to send the woman to my clinic to see what is going on.

Later that day, the woman arrives in my clinic. She explains that she gave birth in March, and then in April, she had bleeding for about a week and a half, along with some right-sided abdominal pain. She was given antibiotics (as usual – they are given for everything here) and the bleeding stopped. She did not see bleeding again until just over a week ago, when she had bleeding for 1 week, which stopped on its own. The right-sided pain had never gone away; it was not associated with bleeding but did seem to be worse when she was bending over or lifting something.

It sounds to me like the woman is getting her period. I tell her this. She is surprised. She is breastfeeding, so she expected not to see her period. I tell her that she can have bleeding sometimes, even though she may not be ovulating and that, in fact, the bleeding can last longer than a usual period because the body doesn’t have its normal hormonal pattern, and so it doesn’t really tell the uterus when to stop bleeding.

As I am telling her this, I can feel the tension from the elephant in the room. The nurse who referred the woman had told me that the woman kept having babies with sickle cell disease. The woman looks profoundly sad – the kind of sad that is not just today, but that accumulates over years, until the person doesn’t even realize she is sad, because it feels normal.

I ask her about the sickle cell problem. She tells me that her three previous children were all born with sickle cell disease, but she has not yet tested the infant. Of the three, one died at age 6 – and before dying, that child had a major stroke, and then a second stroke with seizures that caused the death. Of the living children, her oldest, a 9-year-old girl, had a stroke a few years ago, and now can walk but has difficulty with speech, and her entire left side, including face, arm, hand and leg, are partially paralyzed. As she talks, I can see the weight of this burden emerging on her face. Her eyes become teary, but she keeps talking.

Finally, we get around to doing the physical exam. Although the bleeding sounds normal to me, I do an ultrasound to make sure there are no fibroids or other sources of abnormal bleeding. It is normal, and there is nothing on the right side where she notes her abdominal pain. I do a vaginal exam to make sure there is no palpable cervical cancer, but it is normal too. I explain that the bleeding is just her menses. The pain is in an odd location – far from the pelvis but not really near any specific organ, at the level of her umbilicus but far to the right. It is not tender. To check for a hernia, I have her sit up with her belly exposed. There is no hernia, but there is a large diastasis. During pregnancy, the abdomnal rectus muscles (in the front of the abdomen) can become very weak and separate to accommodate the enlarged uterus. After delivery, they remain weak and as a woman sits up, there is a visible bulge in the center of her abdomen where the muscles have separated.

My guess is that her pain (which she notes is worst when she is trying to use her abdominal muscles) is probably because she is compensating for the lack of midline abdominal strength by using her side abdominal muscles, and preferentially her right side. I can’t be sure that this is the case, but it is my best guess. I recommend a daily routine of increasing repetitions of sit-ups. I teach her how to do them. She can’t even do one without using her hands.

This leads us back to a discussion of her children. She tells me that caring for her disabled and ill children is very time-consuming and takes all of her energy. I can see it. “You look tired,” I say. She has no help other than a young housekeeper (a “house girl”). I tell her that she needs to take 15 minutes for herself every day to do these exercises so that her pain and strength will improve. In truth, the exercises are not life or death, but I sense that this woman needs 15 minutes to herself once a day. She gives the other 23 hours and 45 minutes to her children.

I ask her how many more children she wants. She doesn’t have an answer. I tell her about the statistics of sickle disease – that if both parents are carriers (and clearly she and her husband are), the chances are 1 in 4 that any one child will be born with sickle cell disease. She is very unlucky, having had at least 3 with the disease. I tell her that she needs to think about how big she wants her family to be. There is no way to predict whether her current infant, or future children, will have the disease, but that she should assume that any further children will also have it – because she has to be prepared for the burden that might come if they do.

She starts to tell me more detail about the sickle cell disease that afflicts her children. She tells me at what age each of them started having symptoms, and she tells me about the events that led to the death of the one child. She tells me about the difficulties of caring for the 9-year-old, who cannot attend school and probably will never care for herself. As she talks, tears start to roll down her face. She dabs at them with a handkerchief.

“What about your husband?” I ask.

“He is a teacher,” she says.

“Does he want more children?”

“We have not discussed it,” she admits.

“You need to discuss it. He needs to understand what it is like for you. Maybe he does understand, I don’t know. Because for a father it is also hard. But for a mother, it is even harder to see your children suffer. If your child suffers, the mother suffers 100 times.”

She nods and sobs. “You understand what it is like for mothers, doctor.”

Well, I can’t say that I understand from personal experience, but I have known enough suffering mothers that at least I can make that observation. But that’s all she wants from me – validation and understanding. I can give both.

I encourage her again to consider family planning. “You love your children, but I can see that you are tired. You need to take care of the ones you have, and you are a human, you can’t take care of 10 children when you already have ones who are very sick.”

She shakes her head and shudders at the thought of having 7 more children to take care of.

She promises me that she will discuss it with her husband. She agrees with me that she is too tired, and the burden is heavy. I have nothing to offer her in terms of help – no social services, no referrals, no therapy. I offer sympathy.

She wipes her tears, which have not finished coming. We both express our hope that her newborn infant does not have sickle cell disease. I tell her to come and find me if she needs anything else.

“You know where I stay now,” I tell her.

“Should I call through my friend, or I can come and disturb you?”

“I am here. You can disturb me anytime.”

After she leaves, I can’t get her out of my head - the sadness that emanated from her face. I hope I have helped by reassuring her that her bleeding is normal, but I couldn’t do anything about her real problem.