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What It's Like Having a Medically Complex Child

What My Mom Friends Didn't Understand About Having a Medically Complex Child

Pregnancy and motherhood. It was a time that was supposed to be wondrous and life changing. My husband and I went through a lot to have our first baby: eight years, three miscarriages, and we tried everything except IVF. So when we miraculously found out I was pregnant, we decided not to tell anyone until at least 14 weeks. However, around seven weeks pregnant, I joined an online mom group on The Bump. I wanted to find a group of women with whom I could be friends. Even if they were only my "weird online mommy friends," as my husband called them. Pregnancy wasn't all roses and a beautiful glow for me. It was mostly extreme nausea, throwing up, and low energy. I lost close to 25 pounds with my first pregnancy and went into preterm labor at 32 weeks. Luckily, the doctors were able to stop my labor, but I was on full bed rest for the next five weeks. Lying in bed not able to do anything may sound amazing, but let me tell you, it is its own special form of hell, and my baby group was one of the only things that kept me sane.

Once our babies were born, the nature of the group changed, too. It's amazing how many questions you may have: "Does this rash look normal? "Should my baby be talking more by now?" "How am I supposed to get anything done now that they've dropped their first nap?" Having a group of women to talk to from all walks of life made these things so much easier to handle. The saying "it takes a village to raise a child" is so true, and these women were my village.

I was extremely lucky that I had this group of amazing women to lean on when I became pregnant with my second and we found out at my 22-week anatomy scan that our baby had a rare and severe congenital heart defect: tricuspid atresia, hypoplastic right heart syndrome (HRHS), and pulmonary atresia. I was stunned. No one expects to hear that their baby has a defect or is anything but perfect with 10 fingers, 10 toes, and a cute little alien-looking face in the ultrasound.

I was stunned. No one expects to hear that their baby has a defect or is anything but perfect with 10 fingers, 10 toes, and a cute little alien-looking face in the ultrasound.
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I researched the hell out of his preliminary diagnosis — I'm a librarian, so research is what I do — and once I'd wrapped my head around what his diagnosis meant, I posted about it on my mom group. Never having been through something like this, I didn't realize how annoyed and upset I'd get with some of the moms' responses: "Trust the doctors, they know what they're doing," "Maybe it's not as bad as they think," etc. Looking back, I know they were trying to give me hope or look on the bright side, but these were not the things I wanted, or needed, to hear. That's not to say they weren't still incredibly supportive — they raised money and bought us some of the most beautiful things for me and baby — but it was clear they couldn't empathize with what I was going through.

It's hard for anyone who doesn't have a medically complex child to understand how something like this affects you, your spouse, and any other children.

It's hard for anyone who doesn't have a medically complex child to understand how something like this affects you, your spouse, and any other children. I quickly realized that my mom friends group was now a very small group of women who also had, or cared for, a medically complex child.

During the interstage period of our son's life (the period between his first and second surgeries), life felt extremely isolating. Motherhood is already hard enough during the newborn stage, but with a medically complex child, it sometimes feels insurmountable. The few mom friends I had didn't understand why I couldn't go out or why our son getting a cold meant a week-long stay in the hospital. They never had to put in a naso-gastric feeding tube, use a kangaroo pump to make sure their child got enough fortified breast milk, or give seven medications multiple times throughout the day for weeks on end. It was exhausting trying to get them to understand, and it was hard to see their children hitting milestones that I didn't know if my son would ever get the chance to do.

During this season of life, I also started going to a monthly get-together put on by the hospital for the parents of single-ventricle babies. I joined a multitude of heart groups, including The Children's Heart Foundation, Mended Little Hearts, and the Pediatric Congenital Heart Association, allowing me to connect with others all over the world who understood what I was going through. But I'm even more excited to make more mom friends close to home. I downloaded the Peanut app to help put me in touch with local moms — people nearby whom I can lean on.

All these moms are the women I needed in my life. They are incredibly strong women. They are the moms who had gotten so used to the beeping and alarming of the PICU monitors that they could sleep through them; the moms who wondered if their child would make it through the night; the moms who struggled to balance their home life, hospital life, work life, and personal life and never felt like they got it right for anyone, let alone everyone; the moms who cherished the littlest of things knowing they may be the only good thing to happen that day. These women made me realize that I was doing everything I could for my sweet heart warrior, and although I didn't have a medical degree, I was my child's most important advocate.

Tiberius, my heart warrior, mio guerriero, is now almost 10 months old and thriving after having his second surgery in April. He is catching up on his milestones, and his 5-year-old big brother couldn't be happier with him crawling around after him. Life has become slightly more "normal." I feel now that I have surrounded myself with people and moms who are supportive and encouraging, which I quickly realized is what I needed in a group of friends. I hope that those of you with a medically complex child are able to find a group of mom friends who can support you throughout your journey. Don't be afraid to ask for help, and above all, know that you are your child's greatest advocate and you are not the only one going through these difficult times.

Christina Daltoso is a member of Peanut, the app for modern moms to make new friends, chat, and be a part of a community of supportive, like-minded women. This content was created in partnership with Peanut.

Image Source: Christina Daltoso
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