Cleft Lip and Palate

Today I visited a new baby with a cleft lip and palate. We found out about the baby when a friend of Ana’s came by to see if she could help the family with some good advice (apparently, they’d received plenty of scary advice like, “babies like this can't live” and “the surgery costs $6K”). Ana boiled all Francisco’s bottles, including the Haberman I’d given them (thanks Bronwyn!). Ana had gone through several different types trying to find one that would work (Francisco lost over 15% of his weight in 4 weeks and didn’t gain until 2 months of age), so she had quite a stash. I hadn't heard this but she told the other baby's mom that they didn't even have syringes when they left the hospital (despite delivering in the Parrochial hosp they got no counseling or support with regard to the cleft) so they dripped milk in to Francisco's mouth from the corner of a cloth (her own milk had dried up immediately due to "susto").

Last night when Angel heard us talking about the baby he chimed in that the recent earthquake was probably what did it. Ana agreed.

We went to our neighbor’s house on the way to get the breast pump I’d loaned them 8 months ago and they haven’t returned despite 3 requests and lots of promises that they would “bring it right by”. They didn’t have it on hand so promised to “bring it right by” (that was 9 hours ago now).

The family of the new baby (12-days-old) was living in a sugar cane house with a dirt floor. Mom is 32-years-old and has 7 kids, all healthy until this little boy. He was delivered at home 8 days ago and they haven’t seen any doctors since then. Mom had a good milk supply and has been expressing several times a day but is only getting an ounce at a time now. They are formula-feeding by syringe and the boy actually looked very good. Pink, alert, hungry. He was already peeing well and his poop is yellow. He has a bilateral lip cleft but a perfect nose. His palate cleft is very large, leaving only gums on either edge.

It was such a good experience meeting with the parents. They are devastated and cry each day but love the boy and are giving him all the care they can. Ana and the mom talked about their first emotions: their devastation, their confusion, their exhaustion. Mom’s face lit up as they talked. After a bit, I started to talk a little business. I talked about how this was no one’s fault and the cause is unknown, that feeding and talking and maybe ear infections are likely to be his biggest health challenges but that the rest of him is healthy, that the surgery can likely be done with visiting doctor groups for free, that the surgeries probably won’t be complete for several years, and that preserving her breast milk supply would need to be a big focus of ours now.

It was interesting to see that, while they listened to me and asked some questions and seemed reassured by some things I said, they turned to Ana for nearly all their questions and doubts. Like, if they got the surgery done with visiting doctors would it be done well or was it second-rate surgery. Like, why if she took all her vitamins and went to her prenatal visits this time the baby turned out wrong but the other kids are fine and she didn’t go to all that trouble. It emphasized to me what I have been seeing here, which is that gringo doctors aren’t the cat’s meow like we are often predisposed to think, but that patients are so much more comfortable with their own community members. It was invaluable that Ana was there (though I’d been dreading all morning what things she might tell the mom that were incorrect…I’d actually talked myself into a calmer state by recognizing that it really wasn’t very important that the mom know eclipses and earthquakes don’t cause clefts or that she know that his being dark skinned was not actually a sign that his hemoglobin would be higher and he could have his surgery sooner or that he didn’t need to put wild plants in his shirt when people visited to ward off the evil eye; Ana did tell the mom all these things but maybe it was better that way; better that she spoke in terms the mom related to so that the other pieces of important advice: feeding, pumping, bottle cleaning would be believed).

Ana and I went through the different bottles with the mom. I refrained from pushing the Haberman and let Ana push the Platex (the one she’d had the most success with) and, truthfully, he did best with the Platex, taking 3.5 ounces and relatively quickly! He is a super feeder, something I really can’t explain given the extent of his defect.

I left the house feeling very optimistic for this family. Ana and her sister are going to visit again Monday. Ana’s going to visit the hospital and ask that they cover the cost of the bags for the bottle (the Platex bottle has a compresible bag that will let mom squeeze the milk into the baby’s mouth and control the rate) and any extra formula needed. I think this visit was especially important for Ana, very healing. She can feel, despite (and because of) all the suffering she went through with Francisco, she is now improving, maybe saving, lives of other babies.

Now I just need to get that darn tiraleche (breastpump) back from my darn neighbor!

Sleeping with a smile after his big feed!