01 October 2015

Pregnancy & Protein S Deficiency (My Story)

Maybe someday I will write a more personal post about all of the emotions involved with repeat miscarriage, but in case "just the facts" is useful to someone else in a similar situation, that's what I am posting now.

Pregnancy #1 (at age 23) - No complications during pregnancy (though I was measuring small throughout the pregnancy).  Was induced at 41 weeks and had a healthy baby girl (though a bit small for her gestational age, 6lbs, 14oz).

Pregnancy #2 (at age 25) - Uncharacteristic spotting on two separate days around ovulation, but a positive pregnancy test a couple of weeks later.  I started bleeding at about 6 weeks and miscarried.

Pregnancy #3 (two months later, still age 25) - Nothing uncharacteristic until bleeding began at about 8 weeks.  Miscarriage.

Pregnancy #4 (still age 25) - No complications except measuring small (as I had with pregnancy #1).  Then at 36 weeks, went in for an ultrasound to check position (had previously been breech).  Baby was measuring at less than 10th percentile overall (4lbs 9oz), and less than 2nd percentile with his abdominal measurement.  (Fundal height was 31cm.)  Doctor diagnosed IUGR and mentioned that in the future, Baby Aspirin might be something we consider with pregnancy.  (I started taking Baby Aspirin that very day.)  Here's a link to a more detailed post I wrote about that 36 week appointment at the time.  At 37 weeks, went in for an attempted version, which failed.  They kept me at the hospital for nearly 2 hours afterward to monitor the baby, though.  Never told me why, but it took a while for him to stabilize after the version, I guess.  Three days later I went in for a non-stress test.  After a few minutes, the doctor sent me to L&D for further monitoring.  They kept me for two hours and then sent me home.  Confused by the concern at several appts, I scheduled an ultrasound with the Maternal-Fetal Specialist for the next morning.  It was at that appt that I learned that I had a 50% chance of having Protein S Deficiency (because my father has it as well).  She confirmed a diagnosis of Assymetrical IUGR, noted a drop in amniotic fluid levels, aging of the placenta over the previous week, and higher umbilical cord levels than she liked to see and scheduled us for a c-section the next morning.  We had a healthy baby boy at 38 weeks.  He weighed 5lbs 5oz and was perfectly healthy (other than being admitted to the NICU for a couple of days to get his blood sugar up).

After the baby was born, I requested blood work to test for Protein S Deficiency and any other blood clotting disorders.  The doctor declined and told me that a couple of miscarriages is completely normal.

Pregnancy #5 (age 28) - Took Baby Aspirin from the very start.    Bleeding started at about 9 weeks, and I had a D&C two days later.  Following this pregnancy I demanded blood work and it was ordered.  I was indeed Protein S Deficient (no other clotting disorders).

Pregnancy #6 (still age 28) - Doctor recommended taking Clomid cycle days 5-9, even though getting pregnant was not a concern.  Started Lovenox shots as soon as there was a heartbeat and took Baby Aspirin from day 1.  Pregnancy was proceeding without complication until an ultrasound at 13.5 weeks showed a small subchorionic hematoma.  The doctor was unconcerned but warned me that I might bleed.  Told me I should not be worried, despite my history of miscarriage.  Went in for a gender ultrasound at 16 weeks, but there was no heartbeat.  Had a D&C a week later.

After this pregnancy, I went in to see a hematologist who recommended that I take Coumadin (Warfarin) for life.  I started immediately.  Became pregnant while on Coumadin (accidentally), but knowing the risks, tested the day my period was late and stopped as soon as the pregnancy was detected.

Pregnancy #7 (still age 28) - Took Lovenox and Baby Aspirin throughout the pregnancy.  Was monitored closely, though no complications.  Went in for a non-stress test at 35 weeks and was sent to L&D for further monitoring.  After several hours there, a major deceleration concerned the doctor and they prepped me for a C-section immediately.  Our baby girl was born at 35 weeks, 5lbs 2oz.  She spent a couple of weeks in the NICU, and has been healthy ever since.  (In hindsight, the Maternal-Fetal Specialist speculated that perhaps being on Coumadin at the very beginning of the pregnancy gave it a good running start.)

(Did not restart Coumadin after this pregnancy.)

Pregnancy #8 (age 30) - Pregnancy was unplanned and did not take pregnancy test until almost 7 weeks.  Went in for an ultrasound at 7.5 weeks.  The baby measured 6 wks, 3 days and no heartbeat was detected.  Perhaps it was too early; perhaps my dates were off.  Did not begin Lovenox because bleeding began the very next day.  By the 9.5 week ultrasound, I had completely miscarried.  The baby was gone before I knew I was pregnant.

In Summary
What I wish I had known:
- That my chances of having Protein S Deficiency were 50-50 because one of my parents has PSD.

What I wish I had done differently:
- Demanded blood work after pregnancy #4 and switched doctors if necessary to get it ordered.

In the Future:
- All of our children will be tested for clotting disorders.

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