Musings of a Marfan Mom

Ashley’s Birth Story #1


Awhile back I invited readers to submit their birth stories, to be posted while I take a maternity leave. Since Baby J is here, it’s time to post them! Some of the women have Marfan syndrome like me, but not all. If you have questions for the authors, feel free to leave them in the comments section; I’ll also try to email them any questions I see (as soon as I have time).

Mother of a 3 year old girl and 20 month old boy/girl twins, pregnant with #4
Marfan syndrome

This is the first time I have ever written down my birth stories.
#1 – In my seventh month I was transferred to a high risk clinic with maternal fetal medicine obstetricians. My primary care OB had been comfortable delivering me but her partners were not, so they asked me to seek care elsewhere. When I met the doctors at the new office, I felt immediately comfortable. There were two OBs in the practice and I would get to see both of them. One of the two would absolutely be at my birth. One of the best things about the doctors is that they had experience delivering many women with Marfan Syndrome and not ONE had dissected!

My doctor routinely induces at 39 weeks in women who are not planning a c-section. I think due to the high risk nature of his practice, he prefers that things be “under control”. I had done research on childbirth, but not as much as I have done now. I hoped for as natural a birth as possible, but I was also scared of what could happen. I didn’t know any other mothers or pregnant women with Marfan at the time. I was terrified my aorta would dissect and I would lose the baby, and possibly, my life. I was more than willing to go along with my doctor, even if it wasn’t the process I preferred. Plus, as anyone who has been pregnant knows, by 39 weeks you are pretty uncomfortable. and ready to get the baby out. I had had an ultrasound at 36 weeks showing that Baby girl was already 7 pounds and 11 ounces, so a very large baby was also likely on the horizon.

I cried through Mass that morning, scared and excited about my induction and about becoming a mother. We had lunch with my family and tried to take a few hours to relax and make some last minute preparations.

On Sunday May 20th, 2007 at 5pm I entered the hospital to be induced. I had been told at the office that I would be able to eat while in labor so I hadn’t had dinner. I had also been told that the induction could take up to 3 days. I was scared of that prospect and hoped intensely that things would go much more quickly than that.

Once I was admitted to the L&D room, I met my nurses who were less than understanding of my fears. i was told I was not allowed to eat or drink. I was a nervous wreck by this time and crying steadily. I was given a heparin lock so that I could get fluids when I needed them but still be able to get up to go to the bathroom as I labored. I had an internal cervical check (I was around 2.5 cm) and then I was given 1/4 of a pill of cytotec to get labor going. I began having contractions soon after.

The contractions grew in intensity but I had no pain. At around 10 pm the nurse on call came in and advised me to take a sleeping pill. I felt that I would be okay to go to sleep on my own, but she talked me into the pill. This is the moment I regret most about the whole experience. I had never taken sleep aids before, and the rest of my labor experience is foggy at best.

My husband had just fallen asleep and I was laying in bed relaxing when I felt a pop and a gush. My water broke!! I hated being tied in bed and all the interventions, but i was so excited to be experiencing this normal part of labor. I excitedly woke my hubby and he called the nurse, who came in to check and confirm that what was gushing out of me was indeed amniotic fluid. The nurse then informed me that the doctor had requested that I have an epidural soon after my water breaking so that when the baby began to descend I would be able to “labor down” and shorten the pushing stage. My daughter was posterior, and my contractions were beginning to get quite painful, so I consented.

I waited about an hour for the epidural. My mom arrived shortly after i got the epidural and I know I was in and out of consciousness the rest of the night. The next thing I remember is being checked at around 6am when I was dilated to 9. I was supposed to continue “laboring down” so that my daughter could get as deeply as possibly into my pelvis before I started to push. I remember vaguely hearing someone talking about a c-section and when I asked about it the nurse said, “Oh we were talking about another patient, sweetie. There is no way you will need a c-section. You are doing great!”

At around 11 I was checked again and I was 9.5 with a cervical lip. I was given pitocin and turned on my left side but nothing was helping. I was still quite groggy. I could feel my contractions but I wasn’t in any pain. The nurses told me they were going to try to push back the cervical lip manually and let me try pushing. I did 3 cycles of 3 pushes each and they gave up on me and called my doctor. My husband later told me that he could see our daughter’s hair as I pushed, but at the time I didn’t realize how close I was to crowning.

When my doctor arrived he told me that the cervical lip is often an indicator that the baby’s shoulders are bigger than the head. He told me he could get her out with forceps or vacuum but that possibly her shoulders would get stuck and that we would be in a life threatening situation for our baby girl. This terrified me, and sorrowfully and regretfully I consented to a c-section, which was his recommendation. I was inconsolable. While I didn’t judge anyone else for their c-sections, this had not been in my plan, and this was not what I wanted. We had planned to videotape our child’s arrival into the world, but at this point we turned the camera off.

My mother was dying of Stage 4 cancer at the time and I had desperately wanted her to be there for the birth of our baby. However, we were only allowed one support person in the OR (I probably should have asked for an exception but I didn’t) so my mom went to the waiting area so my husband could be with me.

I was wheeled back to the OR for prep for surgery. I was very anxious and waiting on my hubby to be allowed to come back in. My anesthesiologist was an absolute angel. He stood by my side and talked me through everything, constantly asking how I was doing and attending to my every need. Before they started to cut, I reminded them that my husband wasn’t there yet and someone ran out to get him. He came in as the scapel was hitting my skin.

My daughter was so far down in the birth canal that a nurse had to put her arm through my vagina to push her up into my abdomen. This was a strange sensation to say the least. I had no pain, and in general, the procedure was much more pleasant than I had feared.

At 12:49 our precious baby girl was born, weighing 9 pounds and 14 ounces. She also had a cone head from being so far down so long. One of the nurses exclaimed “Holy cow! It’s a toddler!” She was weighed, wiped off, given her apgar scores and then bundled up and handed to me. I got to carry her out on my chest as I was wheeled to recovery. I was extremely drugged, but I was in love.

The postpartum period was difficult for various reasons. The physical recovery of my c-section was fairly easy but the emotional recovery was harder. My breast milk waited two whole weeks to come in and when it did come in it wasn’t the fountain of milk I expected, leading to a suspicion of insufficient breast tissue. My daughter was high needs and had severe reflux so the reflux coupled with my milk issues led to her being near the bottom of the charts for weight, while she was at the tippy top for height and head size. While the charts are based on formula fed babies, the fact remained that my baby was in a lot of pain, and not gaining weight normally. This was an extremely difficult time.

Things did get better, and since my daughter threw it up anyway, we ditched what small amount of formula we were giving her and I nursed what seemed like 24 hours a day. We started giving her Zantac, which eased the pain of the reflux and calmed some of the incessant screaming. I started to enjoy her and enjoy being a mother. I joke that the first two weeks after she came home were the worst of my life, but what makes up for that is that the past three years have been, without question, the best.

(Stay tuned for Ashley’s 2nd birth story, tomorrow!)

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