Dear Everyone,

Here is an update on the mom who survived acute fatty liver disease of
pregnancy, and since Jean said that it would be a good learning experience
for all, I'll fill in all the details today (sorry this is so long):

I had posted before on 5/15.

On 5/1 she had been having diarrhea and vomiting for 2-3 days, and felt
very weak, but went into labor. She said the doctors told her the cause was
due to too much "cold" on her GI system (Chinese medicine theory), a common
"cause" of GI upsets.  Doctor noted that the baby's heartbeat was lower
than expected (120), and movements were very limited. Doctors urged her to
accept a c-section, which she did reluctantly. (see former email).  She was
never able to hold the baby before they sent baby to another hospital. Mom
was never engorged. The first few days she was under the care of a
specialist from another hospital who would come to visit her. She then
became severely jaundiced.

On 5/5, she was transferred out of the obstetrics hospital to a hospital
which specializes in transmittable diseases, including liver diseases
because her illness took a turn for the worse, and her life was in danger.
 Baby was also fighting pneumonia, pulmonary hemorrhage, possible kidney
failure, encephalopathy from hypoxia and was on a breathing machine in the
NICU completely isolated from parents or visitors.

On 5/11, I saw the mother and she had severe systemic edema with minimal
urine output. Her hands were so swollen that she could barely move her
fingers which were all extended and apart. She looked twice as heavy as
usual.  Her platelet count was around 64K, rising from around 40K, but
albumin level was still too low. Cesarean site was not healing, but was not
infected.

On 5/15, the first day she even tried to express milk and maybe only got
20-25 ml the whole day with a manual pump. This means her edema resolved at
least enough that she could move her hands and use a pump.

On 5/16, she expressed about 80 ml total over 5 pumpings.

On 5/17, she used the manual pump a few times in the daytime and got 15-20
ml combined, and then got a Medela Pump in Style by evening and expressed
25-30ml total from both sides.  Total amount for the day was about 40-50
ml.

The public hospital (which is one that specializes in transmittable
diseases; she was on the obstetrics ward with other women who had
conditions like hepatitis) staff discouraged her from breastfeeding and
told her not even to consider it.  But she had been going to LLL meetings
throughout her pregnancy and had a very strong resolve, hence started
expressing on her own.

On 5/18, her albumin level was 36, considered the low end of normal.
Platelet count was over 100,000. A few other things in her blood were not
quite normal but the hospital gave her medicines to take for at least 2
weeks until the next checkup and discharged her.

The baby was staying in a different hospital - The public children's
hospital, and later on the same day, they discharged the baby. Staff there
did not give the parents ANY feeding instructions or any charts of how much
had been fed, or how they were feeding, etc.  They did remark that the baby
did not like to eat and they had to "inject" milk into baby's mouth.
 Reported birthweight was 2700g.

On 5/19, Baby was rejecting the bottle - pushing out with tongue, annoyed
and crying, but would breastfeed easily and comfortably. Mother reported
baby crying for a couple hours after nursing on and off all day, and still
rejecting bottle. Mother feeling stressed that baby is crying so much and
no way to feed her adequately. (I came down with a bad cold and have only
able to provide help daily by phone, even now). I suggested that she get an
SNS as soon as possible, and meanwhile try to feed baby by cup or spoon.
Suggested finger feeding if she could get a tube. But I asked if baby would
take her finger in his mouth - she said she would not suck on it.  Perhaps
baby has oral aversion from the NICU procedures.

(more continued in Part 2 separately)

Ivy Makelin
IBCLC, LLL Leader
Beijing China

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