We came down from the mountains; a story of eclampsia

“We came down from the mountains”

A father holds his wife and newborn baby in his arms as he waits for his wife to recover from  a coma like state caused by eclampsia.  She had no prenatal care and lived a four hour motorcycle ride from the nearest hospital.  The effects of an extended hospital stay and the long tern disabilities will be devastating to this family.   It is a terrible disease that with prevention, early diagnosis and referral can have less of an impact of women and their families.  

The husband is holding his wife in his arms in what could have been one of many hospitals in Haiti.   I have come in the post partum room to see a baby I had delivered but I am quickly drawn to the bed that is next to the nurse’s desk.   Something is not right.

The mother is draped over her husband’s body and is showing no signs of life.  She is in a coma like state and her baby is sleeping on a sister’s lap.   The IV bags are empty and unmarked.  The catheter bag is full.   There is no sign of a nurse, midwife or doctor.    

I gather her story from her husband who looks on powerlessly.  It is her fourth baby; a girl after three boys.  After the birth, she had a seizure.  He had to run around the small village finding a way to take her to the hospital four hours away.  They stuffed a rag in her mouth and put her between two men on a motorcycle and drove four hours on mountain roads with her seizing.   By the time I meet her she is quiet and comatose.  Her blood pressure is still dangerously high and the baby has not been given anything to eat for over 24 hours.  I look around.   When a nurse finally drifts in I write her BP on a slip of paper and point to the empty IV bags and full urine bag.  She had been my student in a unit I taught her midwifery class on the immediate postpartum.  She goes over and looks at the bag and sighs.   “Mwen ap achte pou medikama” I try to say in my broken Creole.  I will pay for the medicine.   She waves her hand and goes to get the supplies and care for the mother.   I wonder what would have happened had I not drifted by.

Another US midwife and I try to let the family know that she can still nurse the baby.  She has to nurse the baby. I pull back the dress of the heavy, unconscious woman and squeeze her breast.  There is still milk.  I show them all.  Her arms, legs, body are all heavy and unyielding.   I hold the baby to the breast and thankfully she nurses.  We hold her there for a long time as she empties both breasts and the family sees and understands what we are doing.   I know if the mother does not survive, the baby has little chance and if she does survive, the baby will need her mother to keep up her milk supply.   Formula is not a possibility but I look at the mother and wonder how she can ever survive or be normal again.  My new friend tests her reflexes and we peep into her closed eyelids.   The husband strokes her forehead and begs her to wake up.  

 The next day, I would listen at a regional meeting of healthcare providers ,as doctors made fun of village men searching despretly for transport for wives who were seizing or bleeding.    ‘Why would they ask us?  They don’t even have a way to the hospital.”

Their scorn drifts over the table.   “Our cars are for our work.”   I wonder if the man they are making fun of was the father in the hospital; the family I had gotten to know.   I want to say that whoever donated money to your NGO, expects you to give people who are dying and inured and sick a ride to the hospital.   A kind doctor persisits, “But if you are going that way anyway, can you take a patient.”   The doctors of the well funded NGO,  reluctantly agree it might be possible.   It is unlikely but might be possible.  They explain that their  program is for AIDS  and not, I reflect, for postpartum mothers with four children to care for.   I want to ask what if she is a postpartum seizing, bleeding mother who may also have HIV but has never been tested.  How do we even know if she has HIV and qualifies for a ride in the expensive new vehicle.  The conversation is beyond reason and goes on for sometime as we drink cokes and shuffle in our seats.   

Two men are dominating the conversation; one is from the government and one is from a well funded NGO.  The kind rural doctor persists. 

“We need ambulances to bring people to town. This year can the government get us ambulances. “

“Ask your NGO. “  Everyone laughs.   There is not one ambulance system for everyone who  may need it.  There are cars and trucks, paid for by school children and middle class donors in the USA and Canada, that are used as private vehicles for employees.  

There is, I can see, a class system within the established healthcare system.  Some people have vehicles and some do not.  We are there to coordinate our efforts.   We are like the father with his seizing mother standing in the road trying to get help as the “ambulance” goes by.   I am tired of the circular arguments for doing nothing.  I am developing an after lunch bad attitude.  

After the long ride back the town, I go and check on the mother and baby that I have adopted as my personal post partum patients.   I unwrap the baby and make sure she is fed.  The mother has opened her eyes.  They say she can not see but when she asks why there is a white woman there, we all laugh and are happy because we know she can at least see that well.   The IV has come out of her arm and is poking her.  The urine bag is full and her BP is still high.   

The nurse tells me she is waiting for a doctor but at last gets up and fixes the IV but it is still empty.   I wonder how long it will take her to recover, if she ever does, with this care.   In the delivery room, a pediatrician sits and visits with the midwives and nurses.   I count six.   There is a medical team from the states but this is not their exact job.   They are both on the verge of death but it is not anyone’s job to take care of either of them.   I persist.  I am only one woman in a sea of people who need care but I persist with this one woman and baby.  I had watched a baby starve to death in that same room a year earlier so I was not giving up.   I had watched children orphaned by eclampsia so I was not giving up, even if it was only to put the baby to the breast, take her BP and bother the staff enough to make them respond.  

We are having many discussions, at meetings and in the guest house about mothers and families like the ones I am watching over.   This is the question, “If you have limited money, where is the care most important.  Is it more important to do mobile prenatal care, provide transport or focus on the hospital?”

This hospital has a grant for a new NICU and a new c-section room.   There are many volunteer medical teams and a great deal of financial support.  Staff are paid by US based NGO’s but no one believes it is their job to make sure this mother and baby do not die.   She does not qualify for the NICU as she is in the postpartum room and is alive.  It is too late for a c-section.   The father has worn the same shirt for a week and has no food or water.  The mother, when she slowly wakes up, has no food or water.   We give him a few dollars for food and water.

Back to the discussion, I vote if I must, for mobile prenatal care as the most important.  They are all critical but it seems the hospital has the supplies and staff to provide emergency care if they want to.  

The mother had no prenatal care and none was available to her.  There is no way to know if she had a high BP in her pregancny and that if, with identification and treatment, she might have been saved this ordeal.  She says a few words but she is clearly on a long road to recovery and may be disabled for the rest of her life.  Had she been identified she could have come to town to give birth in the the hospital and could have been given medications to prevent eclampsia.   The condition she is in was preventable.   Her other children are somewhere and they can not contact nayone to know how they are .  The husband is not working.  The mother cannot take care of her self, her baby or the other children.   The whole family system is entering a crisis.  The older children may have to leave school and suffer malnutrition.  

I vote, if I must, at this point in time, for prevention and prenatal care.  Then I vote for safe transport.  Most woman have their babies at home with their traditional village midwives and it will  be like this for some time.  At the rate, Haiti, is training skilled birth attendants , it will be decades before women have access to skilled car at birth.  They are  living in remote areas with poor roads.   

I go everyday.  She smiles at me.  I cannot tell what she is thinking or doing.  Her BP is high but better and she has taken a few steps with assistance.   They are preparing to send her home on a motorcycle.   She will most likely not receive anymore care.  

If there was a mobile prenatal clinic with postpartum agent sante’s someone could check on her baby and her, when they arrived home but instead she will slip into the mountains and not be heard of again.   No one will know how they survived or if they survived.   I try to explain ecalmpsia and to say that it was no one ‘s fault and how sorry I am. The father nods.  Perhaps though the nieghboors will consider it a curse or a punishment for some unknown bad behavior in the past.  Without village by village preantal care and education, who knows.  

A translator tells me its epelepsi and is caused by being crazy.  I tell her this is not true at all and she must translate what I say word for word and not say things like that.   I can tell she does not quite believe me or that maybe there is eclampsia in the United States but in Haiti it is epelepsi and caused by being crazy or cursed.  She does not believe I understand Haiti at all.  She says sometimes its better for people to die than to be crazy and have siezures.   “Its how it is in Haiti.”   I suggest that perhaps the mother an dher family do not want her to die when it was not necessary.   She shrugs and checks her cell phone as I rub the mother’s legs hoping I can somehow bring them back to life before the long mot ride home.  

Back at the discussion table, if I must have an opinion, pick one over another I vote for mobile prenatal clinics and transport over more hospital staffing.   I vote for education and care during and after birth but none of it is an easy decision for small NGO’s with limited funds.   

We are midwives. Midiwives can sit with the matrones, high up in the small, rural villages and offer education and care and help sort out who needs to go the hospital and who is most likely to deliver safe at home.  The midwives can walk to homes with post partum agent santes and check on nursing babies.   This is the walk of midwives; heart and hand and woman by woman.  I am not sure what the large NGO’s will choose to do with million dollar grants to make the hosptials better, should women need them but in the mean time I vote for midiwferey care, village by village in the rural coummunites of Haiti.   

As we sit and talk, the family I cared for, is heading home and soon so will I.   In the village I come from we do not have small, local midwifery care before and after birth either.  We too have placed our healthcare dollars into the new NICU and not into the communities women live in.   We focus on high tech care and not prevention; in my village and theirs the understanding of the role and possibility of midwifery care is compromised.  In Creole they say, SageFemme or “Wise Woman”.   They are not meant to be bored nurses acting as the arms for overworked doctors.   They are the entry level to care that is preventative, heartfelt and educational.  They belong in the neighborhoods and villages with soft serhcing hands and voices helping women to have safe, healthy births long before they end up, as this woman did, in a coma and most likely disabled for life.