As an IBD mom I see it as a responsibility and an opportunity to participate in research studies while I am pregnant and as my children grow. I’m currently 20 weeks pregnant (tomorrow!) with my third baby and this time around I’m enrolled in the Pregnancy in Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study. The project was conceived, lead, and executed by Dr. Uma Mahadevan, Professor of Medicine at the University of California San Francisco in 2007.
Since the project launched, more than 1,800 women have participated in the registry. Of that number, over 900 stayed on biologics throughout their pregnancies. I’m thrilled to be a part of this initiative. If my pregnancies and children can provide clarity for a future generation of IBD moms, the extra effort on my part is more than worth it. Thanks to women before me who have been on a biologic and been a part of research while pregnant, I have peace of mind knowing that staying on my Humira is best for me and for baby.
Without studies that indicate how babies in utero respond to medication exposures we would be in the dark about what is best for mom and baby not only during pregnancy, but with breastfeeding.
“There is so much misinformation about pregnancy and IBD including being told not to conceive at all or to stop medication. This is incorrect and dangerous. PIANO was started to provide reliable data for women with IBD considering pregnancy so they and their providers can make an informed choice for themselves and their babies,” said Dr. Mahadevan. “Every pregnant woman with IBD has benefited from the generosity of PIANO moms who contributed their outcomes, good or bad, to the pool of knowledge we have. Every PIANO mom who contributes benefits not herself, but future mothers with IBD. It is an invaluable and precious gift.”
What PIANO measures
There are four main areas the PIANO study looks at:
Whether the level of biologic drug transferred across the placenta to the infant by the time of birth predicts the risk of infection or other adverse outcomes
Whether the achievement of developmental milestones is affected by medication exposure
Whether the rates of birth defects, adverse pregnancy outcomes and complications of labor and delivery are affected by IBD medications
Whether second trimester drug levels can be used to adjust drug and minimize transfer across the placenta to the baby
Since I am just now reaching the halfway point of my pregnancy, I have only had to fill out questionnaires. You are required to do so during each trimester, at the end of your pregnancy, and then at 4, 9, and 12 months post-delivery. Along with that, you can provide follow up until your child is 18, once a year. During this trimester I will also provide blood work and a fecal calprotectin. On delivery day, bloodwork will be taken from me, my baby, and my umbilical cord. Depending on my son’s blood work at delivery, I may be asked for more when he’s 3 and 6 months. If at any time I am not comfortable with him getting his blood drawn, I can always opt out. The cord blood is similar to the baby blood at birth so that is adequate. I can also choose to stop the annual questionnaire at any time.
If a woman receives the COVID-19 vaccine during pregnancy, the PIANO study is also measuring the antibody levels found in the cord blood (on the day of birth) to confirm that the benefit transfers to the baby. Breastmilk will also be measured for the transfer of protective antibody against COVID.
The Findings Thus Far
In a presentation this past fall, Dr. Mahadevan shared findings from PIANO.
“We looked at pregnancy, birth and developmental outcomes in the infants at one year, based on exposure to drug, and found no increase in negative outcomes and no reduction in developmental milestones. Biologic‑exposed infants did have some statistically increased improvement in developmental milestones compared to the unexposed group. Overall, what this study suggests is that women with inflammatory bowel disease should continue their biologics and thiopurines throughout pregnancy to maintain remission, given no evidence of harm, and evidence that disease activity can increase miscarriage.”
The study also found that disease activity can increase preterm labor and birth, all the more reason for women to stay on their medication and not try and go med-free while pregnant.
Looking to the Future
Currently, there is no end date for the study. As long as there is funding, the project will continue. Dr. Mahadevan says with all the new medications coming down the pipeline there is a need for safety data. She says, “The infrastructure of PIANO allows us to study new medications as they come to market, even before they are approved for IBD.”
To participate in the study women must have IBD and live in the United States. Interested in learning more or getting enrolled? Email PIANO@ucsf.edu or call 415-885-3734.
Motherhood is so much more than a word—it’s an expectation and an identity. It’s a right of passage many girls dream of when they think about their future and what their family will look like. But family planning, pregnancy, and motherhood are far from a given, especially for those with chronic illness. As an IBD mom of two with one on the way, I’ve recognized that while my story and my experience may comfort and guide others—it’s only that, one story. I fully understand I am extremely lucky not to have the struggle of infertility or physical limitations to hold me back from having children, despite my Crohn’s.
This week kicks off IBD Motherhood Unplugged, an ongoing series that will be shared periodically in the months and years ahead on Lights, Camera, Crohn’s. The series will feature guest posts from women with Crohn’s and ulcerative colitis who may not physically be able to carry a child, who battle infertility, who grow their family through adoption and surrogacy, who have children following loss—the list goes on and on. Ultimately, I want everyone to feel seen, heard, and understood. There’s not one cookie cutter approach to becoming a mom or having a family.
The first article is by my dear friend and fellow patient advocate and thought leader Tina Aswani Omprakash. Tina is a 37-year-old woman in New York, living with perianal, fistulizing Crohn’s Disease. She’s endured more than 20 surgeries and lives with a permanent ileostomy. Since she was a child, she thought she could put off motherhood and did so through many years of virulent disease. At one point, as a young adult, she needed to go on a disability and be taken care of by her mom. When she got married to the love of her life, Anand, nearly 11 years ago, the questions started.
“Being of South Asian descent, the nosy, busybody aunties at weddings and cultural events would always find ways to jeer and sneer at the fact that I hadn’t had a child yet. And after I started Stelara 5.5 years ago and tasted remission for the very first time in a decade, I too began to wonder: is it time for me to consider my own child?”
I’ll let Tina take it away and explain her struggles with family planning and finding out pregnancy wasn’t in the cards. Her heartfelt words and openness about feeling excluded from being an IBD mom, shed light on an important topic and aspect of our illness that is often not discussed or talked about. We hope in sharing this—if you are going through the same situation, struggles, or worries, that you know you are not alone.
Genetic counseling, surrogacy, and reproductive endocrinologists, oh my
In April 2016, I went to see a reproductive endocrinologist, who did a transvaginal ultrasound. Based on his medical expertise, he thought he could retrieve maybe three of my eggs, which was incredible news given everything I had been through surgically. He had proposed 2-3 rounds of IVF for hormone stimulation and egg retrieval but there was no guarantee that the eggs retrieved would be viable to be combined with my husband’s sperm. He didn’t think carrying the baby was a good option for me given all the scarring from surgery and fistulae. Moreover, fertility is often affected by j-pouch surgery and later excision. As such, he offered me the option of surrogacy and asked me to seek genetic counseling due to the hereditary nature of my Crohn’s Disease.
Anand and I went through months of genetic counseling, an expensive process that didn’t lend to any substantial findings. Crohn’s, as many doctors have explained to me, is spread out over several genes and one gene cannot be targeted necessarily as a form of gene therapy. That left us both stumped as his family has a history of an autoimmune condition called ankylosing spondylitis and I have various skin and bowel autoimmune conditions on my side of the family.
During this time, we also looked into the surrogacy process. Since the reproductive endocrinologist recommended that I not consider a pregnancy myself given all the surgeries, fistulae, and pelvic cysts I’ve had, we obliged. But considering all the legal and surrogacy fees, we were looking at $100,000 for one surrogate pregnancy (at least), which was an extraordinary sum of money for us. So, we decided to table having a child for the time being and think over adoption, another expensive proposition.
Tick, tock, tick, tock…
Two years passed and we came to realize that there is no easy solution. During that time, the IBD Parenthood Project shared excellent knowledge for women with IBD to conceive and carry a pregnancy to term safely. And I thought, let me ask my GI doctor now about his thoughts. Unfortunately, he reiterated the same thoughts as the reproductive endocrinologist shared: for someone with my surgical and fistula history and aggressive family history of Crohn’s disease, it may be best not to try. He also said the risk of me using hormones for egg retrieval would risk a blood clot in a patient with my history.
Part of me was still in denial that motherhood may never be a possibility. Within weeks of my conversation with my GI doctor, I was diagnosed with mild endometriosis by a premier OB/GYN surgeon in NYC. I asked him, “What do my options for pregnancy and fertility look like now?” And he said very openly and honestly, “Bleak at best. Let’s say you do carry the pregnancy and don’t lose the baby, Tina, will I have to cut through bowel and scar tissue to get to your baby?” After a brief pause, he said, “I would recommend adoption if having a child is something you really want to consider.”
While, on one hand, I genuinely appreciated his honesty, on the other hand, the statement, “cut through bowel and scar tissue to get to your baby” seared through my mind for months after and has left its mark even today. I needed to hear it; I needed my bubble to pop. But the statement no doubt cuts and ravages every minutiae of my being as a woman. Not having the privilege to choose to have a baby was suddenly taken from me in that one fell swoop and it left my head spinning.
Losing Motherhood to Crohn’s Disease
My God-given right as a woman was taken from me in that instant. As if having six fistulae and Crohn’s wreaking havoc on my pelvis and reproductive system wasn’t enough, let’s take Tina down another notch. Let’s take away her right to choose to have a child.
Even though voluntary childlessness is always a choice, now I didn’t even have that choice. Childlessness was thrust upon me like a stab wound in the back. All I was left with were unaffordable options of surrogacy or adoption.
So why not adoption? It’s simply too expensive and I do wonder about whether I’ll be able to even take care of the child given my constant roller coaster of health issues and medical appointments. Hiring full-time help seems out of reach, too.
Include Women Who Aren’t Mothers
That day with the endometriosis surgeon was nearly three years ago. And I’ve done a lot of work in therapy to process much of it. But I can’t say I don’t feel left out every time I see a mom scolding her child or complaining about her child(ren)’s mischievousness because I, like many other women with chronic illnesses, will never be able to experience the joys and sorrows of motherhood.
As happy as I am for my friends with children, there is a deep void I’m reminded of every time someone else gets pregnant, hosts a baby shower, or sends along amazingly cute photos of their child(ren). I will never be able to have that, no, but I wish I could still be included in the mommy paradigm as a cool aunt or as a godmother. But I’m often not, and that makes me feel sad and excluded.
Dealing with the Cultural Aspects
In American culture, it’s hard enough as it is to be a woman of my age without a child, but in Indian culture, you’re really considered a pariah of sorts. I’m often asked the question of when I will bear a child now that Anand and I have been married for so many years. I usually find ways to dodge those questions by changing the subject or by simply saying, “whenever the time is right.” It’s not a conversation I want to be having with acquaintances nor do I want to be fodder for gossip.
But when it comes to my close friends saying, “Tina, gosh, you would have made an amazing mother, you have so much good to impart on to the world,” it feels good and bad all at once. I’m flattered that someone would think I could do a fine job as a mother but saddened by the fact that I will never know that for myself.
Becoming a Mother Hen
Alas, today in 2021, I continue to focus on my advocacy work and my graduate program, in attempts to focus my attention elsewhere. And in the words of my therapist, “if I cannot be a mother to a child, I can at least be a mother hen to my IBD community, helping to educate and guide patients of underserved populations who would otherwise feel bewildered.” I take a lot of solace in that and recognize that I wasn’t supposed to be here today with all the near-death experiences I’ve had with my brand of Crohn’s disease. All I can express is my gratitude for being alive today, for being able to do this work, and for being able to be a mother hen in my own way to my community.
To my fellow IBD women & chronic illness warriors: please know you are not alone. Please know it’s okay to be sad, angry, and terrified. Many of us are struggling deeply with the idea of motherhood as our clocks keep ticking. Do your research, learn what your options are and make the best decision with your specialist(s) regarding conception and pregnancy. And if having a child is not in the cards, that’s okay too. Never forget (and I need this reminder too) – not having a child doesn’t make you less of a woman.
