Musings of a Marfan Mom

December 20, 2010
by marfmom
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Mary’s Birth Poem

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).

Mary Krane Derr has been writing and living with multiple disabilities since she was a small child. She will be one of 25 foreign poets featured at the 2011 Kritya International Poetry Festival, Nagpur, Maharashtra, India. She lives in Chicago with her husband near their daughter, now 23, and preschooler grandson.

DOUBLE DELIVERY
By Mary Krane Derr

Plateaus of breath into spikes of heart and womb.

Glucose IV, versus insulin IV: a clear pull and push through the tiniest twists and turns of my blood, diabetic, which cannot hold out my holy combustion unaided, alone.

A needle to the spine-crunch so big, it startles even my syringe-battered skin and morphs me into a woman with rubberized legs that twang out pressure not pain.

Below the spotless white horizon of drapes, a knife-split, a hands-tug, a giant upside down girlchild, skin swirled with grayish wax from inside.

Damply blackhaired alongside the stunned float of her father’s face, she splutters and rages after the novelty of air: the red respiration of all bodies and cells the same chemical reaction as fire.

Spikes of heart and womb into zigzags and plateaus of breath. Diabetic or not: whose blood can hold out such holy combustion unaided, alone?

December 16, 2010
by marfmom
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Ashley’s Birth Story #2

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).

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

(Ashley’s first birth story was published yesterday)

#2 (twins) At my first OB appointment at 8 weeks, I fully intended to go in, guns blazing about a VBAC. I’d done my research and I now felt my first c-section had been unnecessary and I was hoping to avoid a second surgery. On the ultrasound, however, we got a little surprise when we saw not one heartbeat, but two beautiful beating hearts. This changed things a bit.

Throughout the pregnancy I made it clear that I would prefer to birth vaginally if possible. “If possible” meant that the babies were both head down, there were no other complications, and the weights of the two babies were less than 1.5 lbs. apart. My babies were transverse for a while, then breech, but I used some of the techniques on spinningbabies.com to help them turn into the head down position. By the time I was late into my third trimester, my babies were both head down and my daughter was nestled deep into my pelvis.

I was in a lot of pain.

Then we had our 36 week ultrasound and I found out that my daughter was nearly two pounds lighter than my son. This presents a significant danger to the second twin in a vaginal birth because the second twin can descend too quickly which can compress the umbilical cord. Also, there is increased opportunity for the cord or the baby’s limbs to come out of the vagina first. There is always the possibility of a vaginal birth with the first twin and then a c-section with the second twin. That wasn’t a very appealing scenario for me.

Since I had no chance of my doctor supporting a VBAC and I was close to immobilized by pelvic pain and contractions by this point, I opted to get the babies out as soon as possible. At 37 weeks 1 day I had an amnio to determine lung maturity. They checked my son’s amniotic sac since he was the larger twin and usually the larger babies and the boys mature more slowly. The results came back that his lungs were mature, and we scheduled a c-section for the next day.

We arrived at the hospital at the requested time and I was matched with a sweet nurse who got me gowned, prepped, and got my IV started. We had to wait a bit since my doctor is a high risk MFM OB and often has to attend births which are emergencies. Finally it was time to go to the OR.

I was pretty nervous about the spinal anesthesia. I had hoped for the same anesthesiologist I had with my daughter’s birth but I didn’t get my wish. This doctor was nice, but not the angel the first was. I was shaking and crying a bit from anxiety and the doctor and nurse tried to keep me calm and get my spinal administered.

I kept worrying that I wasn’t numb until I was told they had already done the pinch test and I hadn’t felt anything. It was a very strange and heavy sensation with the spinal, much stronger than the epidural.

People were pouring in. It is hard for me to remember exactly who was there but there was my OB, the anesthesiologist, my nurse, the attending OB who was assisting my doctor, two students (I forget if they were nursing students or going to be doctors) and at least 2 nurses for each baby. I know there were NICU nurses as well but I forget if that was in addition to or included in the 2 for each baby.

My husband came in just as my OB was getting ready to make the incision. After a few minutes of tugging, my daughter was born! I was worried that she didn’t cry at first but once she had been wiped off and and done the apgar tests and vaccine she was giving her lungs a workout! They brought her to me to hold while they worked on delivering my son. While I was holding my daughter I began to get extremely nauseous and dry heave. At this point I didn’t feel safe holding her so I handed her over to my husband. My OB was applying a lot of pressure at the top of my belly at this point and the nausea was incredibly intense.

My son’s amniotic sac was intact, what the nurses called a “fishbowl baby”. Everyone put on their goggles, and his sac was ruptured. He was a little blue when he was born and the nurses were rubbing him vigorously to stimulate breathing. Finally he began to cry as well and then he was brought to me to hold. I was still very nauseous but the heaving had stopped so I was able to carry the babies on my chest to the recovery room.

As soon as we got to the recovery room, my husband noticed the babies rooting and helped me get them placed on my breasts for their first nursing session. I am so glad we did this.

In the recovery room it became evident that the babies were fine, but I wasn’t doing so well. I’m not exactly sure what happened, but I believe that due to the spinal, my blood pressure and body temperature plummeted. I was in and out of consciousness but I was conscious enough to know I felt absolutely terrible. I needed my strength to recover and my husband had to go pick up our older daughter (I had a friend staying with me) so the babies were taken to the nursery where they could be under the warmers and I was taken to the high risk unit where I could be on telemetry.

I asked for my babies around 11 pm and I got to see and hold them, but since I was still in and out of consciousness, my friend had to be awake while the babies were with us. After about an hour or so I sent the babies back so I could sleep. It wasn’t good sleep, but it was sleep. At around 5 am I woke up again and I asked if I could have my babies and nurse them. I was feeling much better at this point and the nurse checked with my doctor who said I could! I nursed my babies that morning and I was not separated from them after that. It was so nice to be with them again. Being separated from your newborn is so surreal.

I started to recover much better after that, and I had the typical c-section hospital stay of 3 nights. My milk came in really well this time and it was easier nursing my twins than it had been my singleton. We did a little supplementing in the hospital because it made the nurses feel better, but when we got home we ditched the formula until my twins had a growth spurt that nearly made me lose my mind.

My first two weeks postpartum I had a blood pressure spike which was not terribly high for a normal person, but a bit high for someone with Marfan and on beta blockers.I thought I had a spinal headache until I went to the doctor and my blood pressure was checked. Luckily, since I was already on atenolol I could just double up on my dose (still low enough to breastfeed) and that took care of my blood pressure and the migraine. Then I felt much better, and I really started to enjoy taking care of my new little ones.

Overall, both of my births were positive experiences. My first c-section could not have gone more smoothly, but the difficult part was coming to terms with how my labor had gone. My second c-section was much less difficult emotionally, but the recovery was yucky. While I would strongly prefer a vaginal birth this time, there is some degree of comfort with the known. I am lucky my hospital does all they can to make a c-section as normal as possible. My babies were dried off, tested, and vaccinated quickly while I was being sewn up and after that they were mine. I was allowed to carry my children out on my chest and nurse as soon as I was in recovery. I am grateful I was allowed these experiences, and I would encourage anyone facing a c-section to ask for anything that would make the experience more comfortable and enjoyable for you.

December 15, 2010
by marfmom
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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).

Ashley
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!)