On Friday, following my abdominal ultrasound in which I learned that my twins are still alive, and my bleeding is from two subchorionic hemorrhages in my uterus, I had my initial consultation with one of the nine doctors who comprise the Center for Maternal and Fetal Health, the high-risk pregnancy practice at my local hospital.
Dr. H. was accompanied by a resident, and she asked if it was OK if the resident asked me some questions. I said it was fine. But, after outlining my history, the resident said not a word, posed not a question. I think my case may be too complicated for those who aren’t fully trained.
I am 41.
I did in vitro fertilization (IVF) with pre-implantation genetic diagnosis (PGD).
I am seven-weeks’ pregnant with twin boys.
I am a DES Daughter, whose formerly T-shaped uterus is now a slightly larger arcuate uterus, thanks to my 4½-year-old son stretching it out when he was in utero.
My uterine abnormality puts me at risk for cervical incompetence.
My prior two surgeries to remove pre-cancerous cells from my cervix—a colposcopy and LEEP—also put me at risk for cervical incompetence.
I have Rh- blood, while my husband’s is Rh+.
Since my egg retrieval, I have been inserting vaginal suppositories of Endometrin® three times a day.
I take one baby aspirin and one prenatal vitamin each day.
Because I’m prone to anxiety and depression, I also take one 20mg dose of Fluoxetine®, the generic form of Prozac, daily. (I switched from Cymbalta®, which is not safe during pregnancy and breastfeeding, to Fluoxetine prior to my IVF cycle.)
I have Reactive Airway Disease (asthma), which worsened during my pregnancy with my son; however, I have already consulted with my allergist, who has prescribed medications that are safe during pregnancy.
At my six-week ultrasound, one of my twins, Baby B, was not fully attached to my uterine lining, and he and his gestational sac were “considerably smaller” than Baby A and his sac.
At my six-week ultrasound, I was told Baby B would likely die, and, if I miscarry him, I may miscarry Baby A also.
Because of Baby B’s gestational sac’s separation from my uterine lining, I was prescribed once-daily intramuscular injections of progesterone oil.
At my seven-week ultrasound, Baby B’s sac was fully attached to my uterine lining, he had grown, and he had a visible heartbeat.
However, the day following that IVF clinic ultrasound, I started spotting, which the Center for Maternal and Fetal Health’s ultrasound technician had just diagnosed as originating from two subchorionic hemorrhages inside my uterus.
In response to my spotting, the evening before the IVF nurse had directed me to do twice-daily injections of progesterone oil, rather than the previously prescribed one a day.
In my only successful prior pregnancy, I was dilated starting at 27 weeks’ gestation, so was hospitalized to receive the steroid injections that advanced my son’s development, then put on bed rest.
At 31 weeks of pregnancy, I was dilated further and having contractions, so I was hospitalized again, then sent home on bed rest.
My son was born on his due date, at a whopping 9 pounds, 7 ounces. However, he aspirated meconium (his first bowel movement, in utero) into his lungs during delivery, so he was born in acute respiratory distress, spending five days in the Neonatal Intensive Care Unit. He had no long-term repercussions; however, he has Reactive Airway Disease, just like me.
I handed Dr. H the 2004 X-ray of my T-shaped uterus, plus several pages of information about the pregnancy risks for DES Daughters, printed from the DES Action USA website, www.desaction.org. Thankfully, Dr. H is very familiar with DES exposure and its ramifications, but she said she’d take the materials I’d provided because some members of their nursing staff may need to be educated.
Because I’ve never had the special, more-comprehensive pap smear necessary for DES Daughters, having just confirmed my DES Daughter status six weeks ago, Dr. H said that the one of the doctors in the practice would perform the exam at my next appointment.
My IVF clinic had faxed the results of my two previous ultrasounds, and my former gynecologist had faxed the results of my colposcopy and LEEP, both performed in summer 2003.
Dr. H asked for the contact information for each of my doctors, so she could consult with all, my primary-care physician, who is my gynecologist, the reproductive endocrinologist and genetic counselor at the IVF clinic, and my psychiatrist. I was very impressed with her thoroughness.
She then laid out the facts.
With my twin pregnancy, three outcomes are possible:
- Both babies will die.
- One will live, with the other dying.
- Both babies will live.
She said that my uterine bleeding is not a concern if it is my only symptom. However, because of my Rh- status, she said, if the bleeding worsens or continues, as is, for days, I will need a shot of RhoGAM® to ensure that my body doesn’t start rejecting the twins, if one or both are Rh+ like their father.
She explained that it is rare for twins to be of differing sizes so early in a pregnancy, that such differentiation usually happens later, when the uterus is filled to capacity, with one twin having a better blood supply.
But, she said, the sizes of my twins, based on the ultrasound measurements, are very similar: .54cm for Baby A and .46cm for Baby B. She said this differentiation could simply be the result of the ultrasound technician being a bit off with her measurements, so difficult to gauge with such tiny embryos.
But, she explained, “Because your uterus is abnormal…” Then she stopped herself and said, “I don’t mean to call it abnormal, but…”
I’m well aware that it’s abnormal, so, around me, there is no need to pussyfoot around the issue.
She continued that, because of my uterine abnormality, its blood supply may not be able to sustain two babies.
And, with that statement, any hope for peace of mind vanished. As my twins get bigger, their needs will increase along with their size. And, perhaps, at some point, my DES-induced, deformed uterus will not be able to provide one or both with the blood supply necessary to survive.
This is where I want every single pharmaceutical representative, every single researcher, every single salesperson, every single doctor who knew the risks of prescribing DES to pregnant woman to have to live what I’m living, because only then will they know the damage they’ve done, both physically and psychologically.
Dr. H suggested that I meet with a nutritionist because these twins of mine are “parasites” who will take everything they can from me, so I need to make sure I’m eating well enough for all three of us to thrive. I understand her point, but I hated hearing them called parasites. “Parasite” is such a negative term.
In closing, she went over the practice’s “Maternal Age Chart for Twins at Amniocentesis,” stating that she would follow up with our genetic counselor to learn exactly the chromosomal abnormalities for which our embryos were tested. She then walked through the document, “Management Protocol for Twin Gestation,” to give me an idea of what treatment to expect throughout the pregnancy. She said, while the goal is to deliver at between 38 and 40 weeks’ gestation, twins are normally born at 35 weeks, which, for me, is near the end of March.
In closing, she told to make an appointment in two weeks for a meeting with the nurses, in which they will go over everything I need to know about the practice, plus I can hear fetal heart tones, then another appointment one week later in which I will meet with a doctor to have a physical exam, including my DES Daughter pap smear, plus hear fetal heart tones again.
I walked out feeling relieved that both babies are alive, that they’re still growing, that the source of my spotting has been identified and is not affecting the twins. But, I had thought that, because my uterus is larger than ever before, because my uterine lining is the thickest it’s ever been, because I’d been able to successfully carry my 9½-pound son to term, that I could also successfully carry these surprise twins of ours. And, maybe I can. Hopefully I can.
What I learned is, just like when I was pregnant with my son, I have to take every day as it comes, every positive appointment as a mini-triumph, every additional week that I’m pregnant as miraculous.
And, because stress will not help me or my sons, I have to let go, to give this pregnancy up to God.
That, and take my Prozac every day and never miss an appointment with my psychiatrist…