Tuesday, November 11, 2014

scoliosis and pregnacy

I love reading the New Yorker magazine. There's always at least one article of interest each edition, and the writing is so good.  The only thing I do not like about it is its published frequency.  Every week!  Way too much pressure to finish one before another arrives on the doorstep!  I get my mother's cast offs and that way do not feel rushed.  The negative of this is that sometimes it takes me so long to get to them that I am reading a February edition in October.  Small price to pay I say.

Just this afternoon I was catching up and reading an old copy (only 6 weeks old - practically up to date!) that included an article by and about a woman who never really wanted to be a mother and wrestled with that.  Some of what she said resonated with me and it made me quite sad.  Not drink an entire bottle of merlot sad, but pensive. 

When my scoliosis was first detected I was 19 and it was deemed either too late or too early to do anything about it.  The specialist who confirmed it had just two things to say to me: be active, and you might have a hard time giving birth as it is unlikely you will be able to receive an epidural.

At 19 and a dancer I was already on board with advice #1 and advice #2 just seemed so far into the future to worry about.

As it turned out I married at 33: "late in life", and becoming a mother, which I had always assumed would take place several times, became high on the "to do" list.  But it didn't happen.  Two years later I went through a barrage of tests, and the only thing that came of it was "you have scoliosis" (duh), "you have a lot of endometrial scarring" and "your uterus is heart-shaped".  Whaaat?  There it was, drawn on a scratty piece of paper by the doctor just after a laparoscopy, drawn for me as I came out of unconsciousness and was trying very hard to look like I had all my senses.

What do I make of that?  There is some evidence that endometriosis impacts the ability to become pregnant.  But it's not absolutely prohibitive.  Same thing with a heart shaped uterus, which is rarer, but not impossible.  And despite what many people who do not have scoliosis say, it in no way impacts conception.  I know quite a few people who have both scoliosis and children, although they did confirm the fact that giving birth is not always so easy.  Many have had caesarians, and it's not because they are "too posh to push".

We determined to do everything modern science allows, at least once, as most things cost many thousands of dollars.  In vitro fertilization, where multiple eggs are induced, harvested, allowed to mingle with husband's sperm in a petrie dish, and then re-introduced into the maternal body.  Nope.  Intra-cytoplasmic sperm injection (ICSI), a brand new procedure that did all of the above except that one specific sperm was chosen per egg (strong swimmers with everything intact).  Uh-uh.  Donor insemination, whereby someone else's sperm is injected.  We had quite a bit of fun going through the anonymous but descriptive file and eventually chose someone who liked to dance and to cook and who shared our basic colouring.  Nada.  6 times nada. 

There were other things, but the bottom line is I will never find out if I can or cannot take an epidural.  Why am I telling you all of this?  As I had been told delivery is really the only major concern with pregnancy and scoliosis, I wasn't really prepared for the emotional roller coaster of just trying to get pregnant.  No one was able to figure it out as none of the separate ingredients were detrimental, but collectively they seemed to be.  So I am a happy aunt and godmother and mentor and influence.  My marriage is rock solid.  I have been able to do things I wouldn't otherwise have been able to do and anytime someone complains of motherhood and expenses envy for my life I say "Snap!"

But what was pregnancy like for those others with curves who could conceive children?  What did they experience?

I asked around and ended up getting about as many answers as curves.  Medically speaking, there is little information in the literature on the impact of scoliosis on male or female fertility. There is also no correlation between the progression of one's curves and her age at first pregnancy. Pain was cited as a limitation on sexual practice, which produced some negative effects on relationships. With a bit of education on different sexual positions that lessen pain, and some empathy to ease embarrassment during unclothed intimacy, there really should be no problem with conception.

There are a few issues around pregnancy. A few of the women I talked to had much more back pain in pregnancy, but then some did not notice any more pain than usual. One woman said her curve grew noticeably worse during pregnancy and she is quite worried about the idea of having a second child. For those who had rods in their backs, it was difficult to push at the birth, because getting into a sit-up position was particularly hard to do.  Two of these had to be given oxygen as their lungs were compressed with the curvature and the baby pressing on them.  Several of the women were recommended to stop at two children, given the toll taken on the back.  The one I spoke to who had more than two children regretted it as her curvature is considerably worse as is the pain.

One young woman was recommended to have the fusion surgery but was so keen to have babies that she got pregnant and had major sciatica, spasms, and was almost bed-ridden with pain before having a premature baby. She then had the surgery (worse than giving birth was her comment) but has since had baby #2 with no real complications.

I was intrigued to hear the (second hand) thoughts of a chiropractor who adjusts infants and newborns.  She said that being pulled from the birth canal can cause the babies to experience subluxations in their flexible spines, and scoliosis further down the road.  !!!  That theory might have to be a separate blog post!

A read a research paper finding that scoliosis can increase pregnancy risk as the uterus expands, further impeding the natural upward displacement of the diaphragm and reducing vital capacity and residual volumes. It's difficult for these women's bodies to find room at the inn due to skeletal narrowing, particularly in the thoracic cavity. Breathing is often harder and may require ventilatory support.

A genetic disorder called EDS (Ehlers–Danlos syndrome) cropped up in the paper as relevant.  EDS is a defect in the production of collagen, or of those protein that interact with collagen. The collagen in connective tissue (arteries, skin, intestines and the uterus) helps tissues resist deformation, and so is important for physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic.  Pregnant women with both scoliosis and EDS (severe) might find risks related to uterine hemorrhages/rupture, miscarriage, and premature deliveries due to cervical incompetence.  Depending on the degree of scoliosis (referred in the paper as "spinal deformity" - thank you for making me feel even worse), c-sections are generally prescribed to avoid shifting the body's centre of gravity during birth, and increased joint discomfort.

For those who have EDS-associated scoliosis, it was recommended to take combined oral contraceptives for their added estrogen benefit for EDS-related osteoporosis. Severe EDS and limited mobility due to scoliosis runs the risk of thromboembosis. Caution was give to the teen female population with this as they are establishing bone mass.

Actually the thing that came up with each mother without exception was that the back pain and deepening curvatures of their scoliosis became worse with the early years of motherhood: bending down awkwardly, picking up young children, twisting and carrying things beyond comfort.  Needed refusions are not unusual, and neither are considerable amounts of medication.  One of them said that quite frankly she wished she had adopted a puppy!

1 comment:

  1. Loved this article! I also have scoliosis, endometriosis and a bicornuate uterus! Oh and a bunion too! There definitely has to be some sort of connective tissue link to a lot of this stuff? I also haven’t been able to have kids :(