Meet Monika Aldarondo.
Currently residing in Castro Valley, California, Monika is a a photographer, a podcaster, and first time mother of a 5 year old with a chronic illness called Primary Sclerosing Cholangitis (PSC). In our Meet The Mamas Series, Monika shares her story on what it's like having a chronic illness during her pregnancy and postpartum period, followed by liver transplant. Her beautiful story is like no other.
Monika visiting home after 5 weeks away from her son. He stayed with family while she stayed near the transplant center two hours away for 6 weeks after her liver transplant.
Before getting into our early motherhood questions, can you tell me about your chronic illness? What exactly is Primary Sclerosing Cholangitis?
Primary Sclerosing Cholangitis is a rare autoimmune disease that affects the bile ducts in the liver. Continued inflammation creates scarring that blocks the bile flow and then affects the liver, eventually causing liver failure. It is unpredictable, progressing differently in every person and currently there is no cure or effective treatment.
When liver failure is imminent, some PSCers are able to receive a liver transplant. I had mine when my son was 20 months. It returns in about 20% of transplantees. I was diagnosed with recurrent PSC last year. 70% of PSCers also have Ulcerative Colitis or Crohn’s. I was simultaneously diagnosed with UC.
For me PSC caused fatigue, itching, fat-soluble vitamin deficiencies, jaundice, weight-loss, muscle loss, blood clotting issues resulting in bruising, abdominal pain, malnutrition, and foggy brain. UC causes intestinal inflammation, fatigue, abdominal discomfort, and urgency.
I know your child is 5 years old now, but you look back and you share what was it like being a new mother with a chronic illness?
I felt so much joy as a new mom, because the journey to have my liver and GI team on board for me to get pregnant was a long one. I had to be stable enough for a certain period of time, before they were onboard. I was highly monitored and had one episode where it looked like I might be going into liver failure at 22 weeks, so interventions were needed. High bile acids also increased the chances of stillbirth. So once he was born, safe outside of my body, I was so relieved. We gladly obliged with the recommendation of skin-to-skin to help regulate his temperature. My own chronic illness and the fact that he came a month early, made me more cautious in general of going out of the house at first. But by two months out, we were exploring our neighborhood and taking long walks. At that point, we were already talking about evaluating me for transplant so I was in full, generate and document as many memories as I could with him, just in case.
Because he was tiny, born at 5 pounds, he had a hard time latching, so I had to pump- and I found that incredibly uncomfortable and it was a very emotional process, but I stuck with it and a few weeks in we were able to start alternating. Thankfully our health center had a pilot program where a postpartum doula connected with us as part of baby wellness check ups. Divya Kumar not only screened for postpartum depression, she also gave me her contact info and she was a lifeline with breastfeeding was challenging. I made peace over several months with a breast, pump, formula mix.
Divya Kumar is the amazing mama and postpartum support/mama group leader that does amazing things in the MOC community. Among, many other initiatives, she runs the South Asian Mom support group on Postpartum Support International.
How long was your recovery after giving birth?
My physical recovery was fairly smooth and quick. For both pregnancy and postpartum, my biggest challenge was playing the game "is this because of pregnancy/postpartum or PSC?"
Fatigue, aches, itching, brain fog- the symptoms really overlapped. While my PSC had been stable pre-pregnancy, I had a fairly steady decline in my liver health post-pregnancy. I was recommended for a liver transplant a little over a year after he was born so it was always hard to tell what was what.
What was really helpful in making your life easier as a new mom with PSC?
Access to the Infant Risk Center. Their research on medications and evaluations on the risk of exposure during pregnancy and breastfeeding was so important. I had several medical procedures for my own health, and pump and dump was always devastating. I was always calling them to check which medications or sedatives really meant I had to pump and dump because the medical staff weren’t always sure and their default was always dump to be safe. But that wasn’t always true. I was able to breast feed until he was 20 months, it was actually the last thing I did before leaving the house for my liver transplant.
What are some of your favorite self care rituals to do postpartum
I would baby wear and go for walks. We had walking access to several parks, so I would go out as much as I could. I am not a homebody, so getting out of the house was essential. Since I wasn’t working, I had the chance to explore our neighborhood and city in a new way.
Pumping was so miserable, I always watched a funny show as I pumped. As much balance as possible!
I would love to hear your thoughts/experiences with getting help from family or friends. Did you have help, and what was it like? What would you have done differently in terms of getting help from family or friends?
At the time we lived in Boston, my aunt was local but all our other family was in Florida. I was so lucky to have my mom come for a month, then my mother-in-law for a month and then my sister came for a week. They were all so helpful. They took on the chores and making sure I was able to rest, and my sister even made freezer meals for after she left. Most of our friends stayed away to give us time to rest, but I actually felt a little socially isolated, I wish they would have visited more.
When our family left, I needed emotional support and sought out a local new mom’s group. It was critical to maintaining my mental health. It helped with not feeling alone and I made friends who were also in this new phase of life.
Did you experience any baby blues or postpartum anxiety or depression? Do you have any advice for new mothers struggling with postpartum anxiety or depression?
I don’t recall feeling depressed and my anxieties were all around doing right by my little one. The mom’s group also helped with that, the leader, who happened to be the postpartum doula I met at the clinic, was no nonsense in grounding us in reality and not getting all caught up in the internet hole of conflicting advice. I remember the day she said, “I survived being a baby in the 70s! We survived playpens!” Her style of acknowledging how hard it was and her humor really helped me relax.
What's the worst advice you've gotten for postpartum & early motherhood with PSC?
There isn’t much advice for PSC moms! It’s a rare disease, and statistically it is a white, middle-aged male disease. My doctor’s had not followed a pregnancy/postpartum patient with PSC. That’s one of the reasons I started my podcast, PSC Mami, to interview the women I knew that had had children post diagnosis. It was their support and example that helped me decide to start a family.
What's the best advice you've gotten for postpartum & early motherhood with PSC?
I was a total overachiever and workaholic, but given my health and baby, I left my job. I was very challenged by the change of pace. My sister told me, “You are transitioning from a task-oriented life, to a relational-oriented life.” It was so helpful to remember that, especially with all the mundane and repetitive tasks of new motherhood. I was better able to ease into the new pace and relationship with my son.
Any closing advice for someone who's just about to be a new mom with a chronic illness?
I am not much for giving advice, but there are things I do as a mom that I think are related to having a chronic illness that I can share.
I have written letters to my son every so often about who he is at the moment and letting him know how much I love him, just in case I can’t share that in the future. I over-document for the same reason. I feel like I am creating a bank of memories, felt and visual. I hold him longer, snuggle at night longer. I extend opportunities to transfer love and strength between us. I am insistent he learn Spanish and learn traditional Puerto Rican music so he holds a connection to our culture.
I know that taking care of my health is being a good mom. I try to watch my stress level, and our family decisions are made with an eye to health. I make sure my doctors know him, so we are all clear that keeping me healthy and alive is not just for me. Since he is old enough to see me taking medications and all my visits, my phrase to him is “Mami’s body works differently. All bodies are different and my body needs this to work at its best.” When I have energy, I give him my all. When I don’t, I try to give myself grace.
Follow Monika's podcast called PSC Mami for more stories about the intersection of PSC and Parenthood.
For warrior mothers like Monika, it takes a village to support both her postpartum journey and transplant surgery recovery. At Ritual Meals, we want to be a part of that journey and that village to help you thrive early motherhood by providing you with nourishing meals. Learn more about how we can help with our Postpartum Program.
Interested in being featured in our Meet the Mamas Series? Contact us at firstname.lastname@example.org.