Cystic fibrosis and pregnancy: weighing up the risks
What are the contraindications for pregnancy when a woman suffers from cystic fibrosis? What are the risks and how should they be managed? Here’s an update with Dr. Dominique Hubert, pneumonologist specialised in cystic fibrosis.
Cystic fibrosis, a very incapacitating disease, continues to progress during pregnancy, exposing the future mother and baby to very real risks. Nevertheless, a number of women each year choose to brave these risks.
Sabrina’s surprise pregnancy
“When I found out I was pregnant, I was the happiest woman alive”, says Sabrina. Today, she is the mother of a 7-year-old boy. At 22 years old, her surprise pregnancy was like a gift from above. Aged just four months, Sabrina was diagnosed with cystic fibrosis and grew up with this heredity genetic disease that progressively destroys the lungs and pancreas, obstructing airways and digestive channels by thickening mucus.
The medical world and her loved ones did not share in Sabrina’s pregnancy joy. “It was as if I was committing a crime,” Sabrina remembers, “my family and friends thought I was stupid and selfish”. Sabrina was in fact, at the time, on an antibiotic drip, weighed 42kg and suffered from a fairly serious respiratory condition.
Her doctors were actually astonished that she had been able to fall pregnant naturally, given her lung condition. Cystic fibrosis tends to reduce fertility as it thickens cervical mucus and more than half of women suffering from this disease therefore require fertility treatment or IVF (in vitro fertilisation) to fall pregnant.
In order to continue with her pregnancy, Sabrina had to stop taking an antibiotic harmful for the unborn child, adopt a high calorie diet and stop working at one and a half months’ pregnant. "I loved being pregnant, I told myself to make the most of it. I had never breathed as well as did when I was expecting”.
However, with hindsight, Sabrina does warn women who are determined to get pregnant, “when I gave birth, the disease progressed, I had an infection which lasted 15 days and had to stay in hospital for 1 ½ months and couldn’t look after my baby”, she explains.
The main contraindications for pregnancy with cystic fibrosis
Like Sabrina, around 8,500 people in the UK suffer from cystic fibrosis, with around 4% of the women deciding to have a baby. A woman suffering from cystic fibrosis is not infertile and can therefore have children, but needs very strict monthly medical check-ups (lung specialist, obstetrician, gynaecologist, etc.) with the aim of detecting any complications and providing any necessary care quickly.
“It is important to keep in mind that pregnancy does not slow down the disease in any way, it continues to evolve”, explains Dr. Dominique Hubert, lung specialist at the CRCM (cystic fibrosis resource and skills centre) at Cochin Hospital in Paris.
"These women must continue their antibiotic treatments, in fact we don’t hesitate to intensify the treatment if necessary; but overall, as time progresses, the pregnancies do resemble more and more those of women without illness”, states Dr. Hubert.
Severe respiratory failure, under nutrition with insufficient weight gain, uncontrolled diabetes or pulmonary hypertension are clear contraindications to pregnancy. "The most important thing is the patient’s clinical stability. We would advise against pregnancy for a woman whose breathing is not too undermined but suffers infection after infection, uncontrolled diabetes and under nutrition," explains Dr. Hubert.
Pregnancy does remain a possibility after a lung transplant, but only if the transplant is not rejected; as a precaution, most doctors recommend waiting at least two years. Although rare, a pregnancy-related risk of rejection does exist. "Even if the woman is doing well, pregnancy after a transplant can promote rejection”, warns the specialist.
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