Disability and pregnancy

There are 5.5 million disabled people in Poland, and many of them dream of having children. Why, because of an unfortunate accident or an illness that makes it impossible to walk, should anyone give up their greatest desire?

I was interviewed by Marianna Fijewska for Hello Mama

Marianna Fijewska: You deal with disabled patients who want to become parents. How does disability affect the sexual sphere?

Monika Łukasiewicz: Women with spinal cord injuries often experience problems with orgasm and sexual satisfaction. In turn, men who have suffered a core rupture virtually always develop erectile problems. These can be managed with pharmacological methods but the situation becomes more complicated when there is no ejaculation. Men with physical disabilities often complain of complete lack of ejaculation (only 10-15% of them are able to ejaculate), and even if they do, the ejaculate is often devoid of motile sperm, which basically eliminates their chance of impregnating their partner. Couples who come to see me are usually a disabled man and a non-disabled woman, less often both are disabled, and the least often only the woman is disabled, because then the problems with conception are quite unlikely if, of course, a sexual intercourse is possible.

How do you help disabled patients who want to become parents?

In many cases their only chance of having offspring is an artificial insemination procedure. For in vitro fertilisation, we need to obtain sperm from the man and ova from the woman. For men who have suffered a spinal core injury there are three ways of obtaining sperm: vibratory stimulation of the penis, electroejaculation, i.e. inserting a special probe into the anus and causing ejaculation by stimulating the relevant nerves and, finally, the most difficult and common method, i.e. testicular puncture, during which sperm is obtained surgically. We combine sperm cells with egg cells and create embryos in laboratory conditions. The fertilised cell is then transferred into the uterus using a special small catheter, usually two to five days after the puncture. It is a painless procedure after which the patient is allowed to go home.

What happens with the remaining embryos?

We freeze the developing embryos. They are perfectly safe and, after thawing, their potential for implantation in the uterine cavity is the same as before freezing We use them in subsequent attempts, in case the first one was unsuccessful.

What is the chance of success at the first attempt?

For both non-disabled and disabled patients, the success of the first IVF attempt depends, among other things, on the woman’s age and the degree of the woman’s ovarian reserve, i.e. the number of cells in the ovary. It is estimated that the chance of a successful first attempt ranges between 20 and 30 percent. With each subsequent attempt, the probability of conception increases. We know that in the fourth attempt it is as high as 70 percent.

The cost of one IVF attempt at is several thousand zlotys. I guess that not many people can afford as many as four attempts.

According to studies conducted around the world, around 30 percent of couples give up after the first attempt. These statistics also apply to countries where the in vitro fertilization procedure is reimbursed, so I do not think that money is the most important issue here. In my opinion, the psychological costs outweigh the physical ones. Each such procedure is a huge emotional experience. Many of my patients say after their first attempt that they can no longer cope with so much stress and uncertainty. The paradox is that they give up before their real chances increase. That is why, at the very first visit I ask my patients to be persistent and, preferably, to assume that they will make at least three attempts. Only then can they think about resigning.

Do women experience failed attempts differently from men?

Based on my experience, I think women are more open. During visits they talk more about their hopes, stress and disappointments. Men are rather silent but it is clear that they are going through a lot. I think every procedure is a huge emotional experience and gender doesn’t matter. Disabled patients know that for them IVF is really their last chance of parenthood.

And adoption?

I don’t know about adoption issues, but from my patients’ stories, I’ve learned that one of the requirements concerns the intact health of potential legal guardians. This provision somehow excludes couples with at least one disabled person.

How do other doctors approach disabled people who are trying to have a baby? Doesn’t the medical community think that a disabled person will not be able to fulfil his or her parental duties properly?

I think such attitude may apply not only to doctors. There are many myths in our society about people with disabilities, e.g. that they do not think about sex, do not dream of having a family or are completely incompetent in life. People like to be judgemental but the job of medical professionals is only to assess whether a disabled woman is likely to carry a pregnancy without risking her own or her baby’s life and health. If they think it is, it is worth withdrawing from further opinions.

What should a disabled woman do to find out if she can get pregnant safely?

First of all, she needs to go to a gynaecologist who, after performing routine tests, will assess her reproductive health. Of course, it is advisable to look for a gynaecologist who is experienced in examining and managing pregnancies of women with mobility impairments. The gynaecologist should refer the patient to an orthopaedist and urologist for further consultation. If all these specialists agree that a pregnancy would be safe, the woman can begin trying for a baby.

Can you explain how pregnancy progresses in disabled patients?

Mobility impairment and pregnancy significantly increase the risk of thromboembolic disease, so it is recommended to introduce preventive administration of so-called low-molecular-weight heparins, which have an anticoagulant effect. Furthermore, chronic urinary tract infections, due to urinary problems, are common in pregnancy and may contribute to miscarriage. As pregnancy progresses and the belly grows, pressure on the diaphragm occurs causing breathing problems, so breathing exercise is needed. Pregnancy increases the risk of osteoporosis and anaemia. Therefore additional calcium and iron supplementation is necessary. Moreover, mothers-to-be, due to their disability, are often partially or completely deprived of sensation in the pelvic area. There is thus a concern that they will not feel the contractions that herald labour. It is also common that labour begins much earlier than it should.  For this reason, they are usually admitted to hospital at the perinatal pathology ward before the due date, where they wait for the labour to begin under constant medical supervision.

That’s a lot of complications.

Indeed, but do these complications mean that disabled people cannot be parents? Of course not. There are 5.5 million disabled people in Poland, and many of them dream of having children. Why, because of an unfortunate accident or an illness that makes it impossible to walk, should anyone give up their greatest desire? It is all a question of proper medical care. Instead of pretending that there is no problem and that infertility is not a disease, we need to speak out about it and educate the society so that people view differently the disabled who want to become parents.