Friday, April 12, 2013

Almost forgot about the feet....

Today we got the following letter summarizing our neonatology consult - a good summation of everything going on.... The day we discovered the heart defect they also mentioned the potential for club feet. Nobody's mentioned it since, so I guess I had just assumed once they got a better look, it was no longer a concern. Shows what happens when you assume... Sigh, one more thing to have to think about... I am also now paranoid about congenital toxoplasmosis. Feeling like we just can't catch a break. Newborn's are hard enough and now we're going to have a tiny newborn who will have trouble eating and breathing and who's going to be miserable because of foot braces. All I wanted was a happy, healthy baby... Very sad and feeling very sorry for myself at the moment.



Thank you for referring MOM for antenatal neonatology consultation regarding the fetal diagnosis of atrioventricular canal defect of her singleton pregnancy. We have reviewed copies of the medical records provided.  We had the pleasure of meeting MOM and her husband on 4/2/13 to discuss the anticipated perinatal plan of care for her infant.

As your records indicate, MOM is a 37 year old G2P1 with a remote history of Behcet’s disease 12 yrs ago for which she is not on medication, appendectomy in 2003 and cold induced asthma.  Previous pregnancy was uncomplicated and delivered at 39 weeks via a C/S due to failure of decent.  Outcome was a healthy male infant who weighed 7 lbs. She is currently healthy and her EDD is 4/26/13.

The current pregnancy had been generally uneventful until a prenatal ultrasound scan in October 2012 at GA 12 weeks done by Foxhall OB revealed increased nuchal translucency with fetal growth initially within normal limits.  She was then counseled by Genetics and advised on chorionic villous sampling to rule out the three common syndromes:  Trisomies 13, 18 and 21. All tested negative with a normal karyotype.  In addition to CVS, patient underwent amniocentesis in January 2013.  FISH study was done to rule out 22q deletion, Noonan’s Syndrome, LEOPARD Syndrome, Costello Syndrome and Cardio-Facio-Cutaneous Syndrome, all of which tested negative.  Repeat fetal US in early December 2012 revealed a SGA fetus, small VSD/suspected AV canal defect and suspected coarctation of the aorta with bilateral club feet. A repeat fetal ECHO done late December confirmed initial findings of common AV valve and defect with other cardiac structures being normal even though the study was limited.

Serial ECHOs were then done monthly and continued to confirm complete AV canal defect, normal atrial and visceral sinus, normal atrioventricular and ventricular arterial alignment, normal left and right outflow tracts, normal sinus rhythm, normal aortic and ductal arches, no significant AV valve regurgitation, excellent heart function and no evidence of hydrops fetalis. Patient had weekly BPP performed and scored 8/8 consistently.  Umbilical artery Dopplers were normal with good end diastolic flow.  It was recommended at 33 weeks follow up to deliver infant at 37 weeks due to consistent poor fetal weight gain with all measurements < 5th percentile.  Fetal ultrasonography throughout revealed only a concern for club feet and grade 1-2 placenta.  Parents had already met with the Pediatric Cardiologist at Children’s National Medical Center; last visit 4/3/13 with Drs. Anita Krishnan and Mary Donofrio.  An ECHO was done with similar reported findings as previous and per Dr. Donofrio’s note, she does not need to see the family again during the pregnancy. She does, however, recommend a consultation to be called after delivery to confirm diagnosis and then later to arrange outpatient follow up.  The family also has met with Pediatric Cardiac Surgery at CNMC and it is their understanding that corrective surgery would be at 4-6 months of age provided there is optimal growth and no unforeseen complication like pulmonary hypertension necessitating earlier surgery.

Family history reveals mom is of Northern European decent.  Father of the baby is of Ashkenazi Jewish decent but not previously tested for Tay Sachs disease. There are no familial congenital anomalies/ syndromes that parents are aware of.

During our meeting today, we discussed the baby's anticipated plan of care.  Planned management for
MOM and her infant include delivery at MedStar Georgetown University Hospital.  We understand that an induction of labor date may potentially be designated as early as the week of April 15th when she reaches 38 weeks of gestation.  It is our understanding that MOM will attempt a vaginal delivery unless an indication for a C-section arises.  Neonatology team will expect to be notified at time of delivery to attend delivery. We will assess the baby at time of birth, and while we do not anticipate any need for extraordinary respiratory or hemodynamic support at the time of birth, we will be prepared to provide necessary support should the infant require any.  After stabilization of the baby and bonding with the parents if stable, we will be prepared to admit the baby to our neonatal ICU for further evaluation.

We have discussed at length the common challenges faced by small infants including hypothermia and need for temperature support in incubator, hypoglycemia, possible need for intravenous nutrition, feeding problems and jaundice.  The placenta will be sent for pathology. There is, however, no documentation of any TORCH screening labs on mom as a potential cause for IUGR. After the baby is born, we will revisit the need for such testing.  Orthopedic evaluation of the suspected club feet will be done after the baby is born.

Since the cardiac defect has been consistently stable with excellent heart function and no other cardiac anomalies, it is not anticipated that the baby would face immediate problems from this, although congestive heart failure may develop after several days.  The baby will be seen by and followed together with Pediatric Cardiology after delivery to evaluate the need for further intervention.  We discussed the possibility of congestive heart failure developing and the need for diuretics and other medications, and discussed with the parents the criteria for discharge home after the baby is born.  Mom wishes to breastfeed and is encouraged to do so.

The parents asked very relevant questions regarding the plan of care for their baby and these were answered during the consultation.  MOM and her husband were given a brief tour of the NICU at the conclusion of the meeting.

We look forward to working with you to ensure the best possible outcome for this infant and family.  If you have any questions, please do not hesitate to contact us at 

Sincerely,




No comments:

Post a Comment