Maybe Baby? What to Expect With DI Before You're Expecting
By Jackie Duda

Constantly running to the bathroom, drinking inordinate amounts of water? A sure sign of pregnancy, right? Women usually take this situation with a grain of salt and accept the inconvenience as a temporary condition caused by a growing uterus. But what if hourly potty breaks and consuming endless bottles of water are a signal that Diabetes Insipidus (DI) is the real culprit? How do women manage both a pregnancy and DI? What type of medical treatment should be sought? Are there underlying risk factors to consider? Will desaminod-arginine vasopressin (DDVAP), also called desmopressin, a commonly prescribed nasal spray or tablet, work? Will this drug harm the developing baby? Whether you've been recently diagnosed with DI or have had the disease for years, you no doubt have numerous questions running through your mind before the plus sign starts to darken on the pregnancy test stick.

Maintaining your health throughout pregnancy is imperative to the well-being of both the mother and her developing baby. However, having a chronic illness will mean additional tests and observation to ensure that all goes well. DI patients face additional challenges as they monitor themselves and their condition. Finding a doctor who understands the diagnosis and recognizes the need for treatment is vital to keeping yourself and your baby well.

Arnold Moses, MD, Professor of Medicine under the Division of Endocrinology at the University of Syracuse Medical Center agrees. "Stay educated, take your medication, and see your doctor regularly," he says. These three factors will help women and their babies as they progress through the next nine months.

Which "Type" Are You?
First, know what type of DI affects you. The Diabetes Insipidus Foundation (DiF) provides information about all four types at http://www.diabetesinsipidus.org. Central DI affects both males and females equally. Also known as neurogenic, hypothalamic, pituitary or neurohypophyseal, central DI is caused by a deficiency of the antidiuretic hormone vasopressin. Nephrogenic DI occurs when the kidneys are lack receptors that respond to vasopressin. It rarely manifests itself in females, being more likely a trait women carry and pass along to male offspring. Dipsogenic, a form of primary polydipsia, is caused by abnormal thirst and an excessive intake of water or other liquids.

Gestagenic DI, also known as gestational DI, but not to be confused with "gestational diabetes," is also caused by a deficiency of vasopressin. However, this form only occurs during pregnancy and usually disappears soon after the woman gives birth.

You Can Maintain a Healthy Pregnancy with DI
According to Moses, while central DI can be a major inconvenience, it can be controlled when the patient takes the prescribed medicine and drinks the right amount of water. "Take the DDVAP and drink according to thirst when pregnant," he advises. "If the patient is well educated about her condition, drinks when thirsty and takes DDVAP when experiencing 'break through' (frequent urination); she should be able to experience a normal pregnancy devoid of serious complications."

Medical Testing? Proceed with Caution
It is also important that patients with DI wear medical alert bracelets or carry a medical information card in their wallets. Problems can occur when a medical professional other than the women's regular OB/GYN orders a test or recommends medical treatment that deprives the patient of water or requires her to retain fluids in anticipation of a medical procedure. "Everyone," Moses says, "on the patient's medical team needs to be aware of her DI to respond appropriately during the course of treatments and tests."

Pregnant patients with DI will respond adversely to sonograms that require massive consumption of fluids and retention of urine for at least an hour prior to the procedure. "DI patients simply cannot fulfill this requirement. Medical technicians and physicians in charge need to be aware of this fact," Moses said. "If left unattended, severe reactions such as seizures, dehydration, loss of consciousness, and in extreme cases, death can result if proper medical protocol is not followed."

DDAVP - What's the Scoop?
According to information from Adventis Pharmaceutical, the makers of DDAVP, the use of DDAVP, a synthetic analogue of the natural pituitary hormone 8-arginine vasopressin, has not been studied widely in its use during pregnancy or in postpartum moms who breastfeed. Research has not been widely conducted on pregnant patients or breastfeeding mothers," however, "no causal connection between these events and desmopressin acetate has been established." DDAVP was noticed to markedly change the plasma in nursing mothers, "but little if any change in assayable DDAVP in breast milk following an intranasal dose of 0.01 mg."

"DDVAP is just as effective during pregnancy, although the dosage may be increased slightly as the placenta metabolizes vasopressin more quickly during pregnancy," says Dr. Gary Robertson, a world renown expert in DI and medical specialist under the Division of Endocrinology from Northwestern University in Chicago, Illinois. He reports that during his clinical experience with pregnant DI patients, he has not observed any identifiable instances of problems stemming from DDAVP use.

Watch that Sodium!
"In central DI," Robertson explains, "there is no need for a low sodium diet, though serum sodium concentration levels should be monitored throughout the pregnancy." A baseline reading should have been obtained through various blood work drawn prior to the pregnancy. Average levels hover around 140 in a non-pregnant state, and can dip to 130 - 133 during pregnancy.

Once a woman becomes pregnant, serum sodium levels can drop fairly quickly to about 130. This is normal. "There may or may not be a propensity to drop the sodium level too far when DDVAP is given during pregnancy," Robertson says. "Although it's a mainly a theoretical concern, serum sodium levels should be monitored frequently as a precaution."

Although a baseline reading can't be obtained if a woman acquires DI after she gets pregnant, monitoring is still important. "Even though medical professionals won't be able to compare the levels to the pre-pregnant state, check the electrolytes frequently after starting treatment, especially during the first week or two," Robertson says. After determining that serum sodium levels are not dropping dangerously low, monitoring can continue less frequently, roughly once a month or every two months. In a non-pregnant female, he says, monitoring every six months should be adequate. Some physicians may opt to wait and see if the patient develops symptoms of a low sodium problem. Very early indicators are headache and nausea. Ongoing symptoms can progress to a "spacey, confused feeling," eventually leading to loss of consciousness and seizures, increasing in severity as sodium levels plummet.

Learning from Experience
"I was told that my form of DI is hereditary. However, I don't know of anyone in my family with the same disorder and haven't done any testing. I would love to find out from a specialist how or from whom they believed I inherited this form of DI," says Christie Daugherty, who has central DI. Not only hasn't the disease manifested itself in other family members, her firstborn son also shows no signs of DI.

Daughtery first discovered her condition toward the end of her first pregnancy. "I was told I would have this for the rest of my life and had to take a hormone nasal spray called DDAVP or I could 'pee myself to death'," she says. Uncontrollable thirst and constant night-time searches for the bathroom led her to believe her problems were all pregnancy related. When the condition continued postpartum, she sought medical advice. A psychiatrist eventually diagnosed her with DI, saying it was associated with her pituitary gland.

Daughtery is currently seven months pregnant with her second child and has had no complications with her pregnancy. She conceded that it did take over a year to get pregnant and she had one miscarriage that was apparently unrelated to her DI. She also had a miscarriage before her first child was born. "The only difference I've noticed is an increase in my daily dosage of DDAVP," she says. "I have spoken to a couple of moms via email who have had babies with DI and they have shared that they didn't have any complications either. That was encouraging to me."

DI and Fertility - Any Correlation?
DI itself doesn't appear to have an impact on fertility. According to Robertson, it is most likely the underlying disease that originally caused the DI that can influence fertility, such as hormonal problems or tumors. "As far as I'm aware, there is no direct correlation linking DI and infertility," he says.

Sentiments echoed by Merry, another patient with CDI who has had the condition since she was two years old. "It didn't cause a problem until I was in about 1st grade and the teachers wouldn't allow me to just get up to use the bathroom if my work wasn't finished."

Her inherited form of DI was also diagnosed in other family members, but apparently had no effect on her fertility. Her sodium levels were checked after she became very ill as an adult and went to the emergency room. Prior to this, she had not been monitored before, nor was she aware that sodium levels should be assessed when a patient has DI.

"A few years later, I got sick with horrible headaches and fever and chills," she says. "After a couple days of being in bed feeling horrible and alternatively not being able to warm up in front of the fireplace and having to walk outside to cool down, my husband insisted I go to the ER." After receiving some confusing diagnosis, hospitals and doctors bantering back and forth as to the reality of the disease, she discovered she was pregnant. During a urine collection test, she had collected eleven liters in under 24 hours. She also had blood drawn during each OB/GYN office visit.

A Patient's Advice
What advice does Merry McPherson have to offer other women who have DI and are considering having children? "You should know that DI is a rare disease. You'll have to educate yourself and your medical team to some degree."

"Be prepared to visit an endocrinologist [if you have CDI] and receive monitoring throughout the pregnancy if you take DDAVP. Water intake must be carefully watched while using DDAVP and you have to be careful you don't suffer the consequences of excessive water consumption while on DDAVP," McPherson says.

McPherson had reached a point about four years ago where she was drinking a 64 oz glass of water at once and then refilling it constantly, but she has now decreased her intake to a 32 oz glass instead. She can drink one all at once and sometimes a little extra, and then fill it up to keep by her side.

McPherson explained, "My bladder is also enlarged, which is noticeable when I went for ultrasounds. Once the tech insisted I had to use the bathroom even though I had just went right before walking into the room... so I had to get up off the table and use the bathroom again."

She also advised having your children checked for DI if you yourself have the disease. It will save them, she said, embarrassment in school, and also other complications, such as enlarged bladders.

Tracy Zachary, who has CDI, says that "In 1987, I acquired DI due to a closed head injury that resulted from an automobile accident. On November 4, 1995 I delivered a full-term, 8 lb 4 oz boy. He was and is healthy. There were some complications with pregnancy and delivery, but no one 'directly' attributed the problems to DI."

Robertson and Moses both agreed during their interviews that it is possible to maintain a normal pregnancy if you suffer from DI. The greatest danger of course is dehydration. It's necessary to keep your DI under control during pregnancy. Staying informed and following your doctor's advice can lead those who have DI down the path toward a happy, healthy baby.

Jackie Duda is a freelance writer based in Monrovia, Maryland, specializing in high-risk pregnancy, multiple miscarriage and general women's health topics.

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