Parents have given permission to post this case report.  The subject line is
a reference to the saying that when you hear hoofbeats in Texas, it’s
probably not a zebra.

Girl born at term, normal birth, baby vigorous at birth despite cord
breaking spontaneously at moment of birth and not discovered for several
minutes as baby was skin to skin with mother and completely unremarkable
clinically.  Birthweight 3270 g (7 lb 3 oz)  Baby showed no signs of
difficulty at any time in the period of observation postpartum, and
haemoglobin was checked routinely because of the cord mishap, at 6 hr.  It
was in lower level of normal range, routine screening pulse oximetry showed
over 99% saturation at same time.  Baby stayed with mother in line with
procedure after normal birth, went to breast and attached spontaneously a
half hour after birth, suckled well and settled, had normal color and
temperature, slightly rapid respirations.  Transferred home at ten hours
post partum, home visits by midwife planned for follow up the first three
days until peds exam done.



Second day of life baby was observed to have rapid respirations, 80 per
minute at rest. She was otherwise normal, breathing was not labored, no
stridor, but shallow breaths, normal color, no fever, baby awake, alert,
feeding on cue, having transitional stools by end of day 2, and no other
investigation was deemed necessary.  Seemed to be feeding well though mother
developed blisters on one nipple, other side fine.  Examined by
paediatrician on day 3, again according to routine procedure, who found
nothing abnormal, no heart murmurs or abnormal breath sounds.  Naked weight
on day was 3110 g or 6 lb 14 oz, about 5% under birthweight. Stools and
urine output normal (generous). Apart from newborn screening blood test (PKU
and hypothyroid) no blood tests ordered.  Continued to have rapid, shallow,
non-labored respirations throughout this time and did not show any other
signs of deviation from normal.



Over the next days, baby continued to feed well while mother had a few days
of painful engorgement, treated with simple home remedies and ensuring
effective milk removal by baby. Blisters on nipple resolved as lactogenesis
II began, assumed to have come from negative pressure on skin of nipple
before milk in abundant supply. Rapid respirations continued at same level
as on day 2, continued to be no signs of respiratory distress or infection,
only an isolated but unmistakable tachypnea.



After the initial engorgement subsided, baby and mother showed signs
consistent with moderate oversupply: frequent discomfort from overfull
breasts in mother, and baby spluttering, choking, and coming off breast
occasionally, generally at time when MER was at its peak.  Baby’s stools
frequent and almost frothy.  Infrequent signs of stomach pains, possible
gas, and some spitting up but baby never seemed to have discomfort for more
than a couple of minutes at a time and continued to be happy to be at
breast.  Mother also reported baby ‘vomiting’ and described this as distinct
from spitting up.  When baby vomited she was at the breast, and would first
swallow several times in a row without taking a breath, then pull off, look
worried or uncomfortable, and milk would then spew out of her mouth and
sometimes nose.  After a few moments she would then come back to breast and
feed normally, rarely vomiting or spitting up more than once in any given
feed, and not doing this at every feed.  Mother concentrated on positioning
and attachment, emphasizing deep latch to minimize swallowing air even
during MER at a full breast.  Mother described ‘spitting up’ as what
happened if she changed baby’s diaper right after a feed and lifted her legs
higher than her belly, or if baby burped without being in upright position
for a few moments first.  Because of the signs of possible oversupply,
mother tried out the complete drainage followed by block feeding method as
described by Gonneke, and her discomfort subsided while the feeding features
in the baby improved.



Due to phenomenally slow mail sorting system in the community care dept in
her area, baby had not been seen by public health nurse by day 19 and mother
contacted one of her midwives from the birth, at urging from grandparents,
because of the continued rapid respirations.  Midwife made home visit, did a
new haemoglobin test and found Hgb of 14.5  Observed and auscultated baby,
did not hear any abnormal sounds but confirmed rapid, shallow respirations
and thought this should be investigated.  Tried to refer to pediatric
service in hospital where baby was born, was told by paediatrician on call
that this symptom on its own was not grounds for an acute referral and
instructed to send mother to her GP who should evaluate baby and refer to
specialist if needed.  Mother got appt the following day, GP ausculated
heart and breath sounds carefully and slowly, palpated abdomen, found
nothing out of the ordinary except the rapid respirations.  This being
Norway, GP did not have scales in office so baby not weighed.  New Hgb level
was measured and found to be 14. Infection parameters in blood checked, all
normal and this was a formality as baby showed no clinical signs of
infection.

Due to baby’s age (3 weeks) GP sent referral to the regional center
requesting evaluation by a specialist paediatrician.



The next day the public health nurse made her first home visit, and when the
rapid respirations were pointed out to her, she was also informed that a
referral had been made and she assumed the appropriate instance was on the
case, took no other action.  Weighed baby and found normal gain from lowest
weight on day 3, abundant yellow stools and wet diapers every day and baby
appeared satisfied in every way.



When another week passed with no word from the pediatric service to which
baby had been referred, during which the vomiting seemed to increase a bit
and baby started showing more signs of discomfort after feeding, and the
rapid respirations were unchanged from day 2, the grandparents scared the
mother into calling her GP to ask again for evaluation by paediatrician.  GP
then phoned specialist clinic in hospital and baby was given appt the
following day, when she was exactly four weeks old.  This appointment seemed
to be to humor the anxious mother more than anything else.



Saturation monitor applied on arrival, sats in low eighties. Baby awake and
content.  Echocardiogram seemed to show left ventricular hypoplasia but this
was ruled out by a more extensive echocardiogram at center for pediatric
cardiology where baby was transferred quickly from the first clinic due to
findings.  Diagnosis, made by echocardiography, was totally anomalous
pulmonary veins.  This complication affects one baby in 10 000 and is
treated surgically.  The diagnosis was made last Wednesday and my amazing
little granddaughter is now in intensive care, recovering from her surgery
done on Saturday.



I couldn’t possibly write this post before she had gotten through the
surgery.  My daughter and son-in-law were happy to consent to having it
posted, in the interests of making people who work with breastfeeding aware
of the condition.  Children with it usually get picked up when they are much
sicker.  It is excruciatingly difficult to detect since it does not cause
any abnormalites on auscultation and the baby can look great as long as the
compensatory mechanisms are still working.  When they are no longer able to
compensate they deteriorate over the course of a few days to the point where
they need emergency surgery to survive.   My granddaughter was
well-nourished, well-hydrated, and not at all stressed because her basic
needs have been met so well by her parents, from the moment she was born
right up to when her father handed her over to the anesthetist.  (I hope I
never see that expression on his face again.  But the smiles on our faces
when she was brought to ICU following the surgery were just as far on the
other end of the spectrum that goes from despair to joy.)  She is not out of
the woods yet but the biggest wolves have been vanquished and she has
fabulous people, in addition to her parents, looking out for her for as long
as she’s in there.



I’m not one to cry zebra often.  But once in a long long while, the
hoofbeats you hear in Texas aren’t horses or a cattle stampede, they are a
zebra escaped from the zoo.  So if your gut tells you that there is
something wrong, and it won’t leave you alone, please respect yourself
enough to get it investigated before calling it a horse.  I hesitated to
make my daughter anxious but the bottom line was, I was anxious and my
husband even more so.  Our concerns, as put to our daughter’s health care
providers, were heard in time.  But it’s scary that it was all down to us
because there IS no planned contact between newborns and the health services
besides the visit from the public health nurse, who comes on ONE home visit,
theoretically within two days after family are discharged from hospital.

<http://ammehjelpen.no/paamelding-fagseminar-2011?id=1132>

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