What It's Like Being A Cleft Mom

by Rachel Diamond
Originally Published: 

Even before I became a parent I was a worrier, and now that I have two kids of my own, I am a champion. I can “what-if” with the best of them. And yet, I never saw this coming…

It was August 16, 2011, and I was 20 weeks pregnant with my first child. In order to get to this point, I tried all sorts of methods. I tried online fertility tea with “baby dust” (read: confetti) to spread on my bedsheets, acupuncture, some terrifying Chinese herbs, and chakra balancing. We also use ovulation kits and Intrauterine Insemination.

I was worried about the 20 week scan and either having a boy and not being able to relate to him, or having a girl and disappointing my husband. I was woefully ignorant about any other purpose of this ultrasound.

As it began, my husband and I made idle chit chat with the technician. We talked about the pros and cons of each gender. Everything was looking good but our baby kept covering it’s face. We joked about the baby being coy. The technician kept going over and over the area saying that she wanted a better look. In the midst of this we learned that we were having a girl. We sat in the waiting room and called our respective parents. He assured me that he was excited about a girl and not disappointed. We waited to see my obstetrician. We had approximately 15 minutes of pure joy before our world changed.

My doctor came into the room and abruptly stated that our baby had a bilateral cleft lip and possible cleft palate. We were given a list of instructions and a number at the children’s hospital to set up a meeting with the cleft team. She made it sound so simple, a little surgery to fix a little anomaly and then a scar.

What followed was a whirlwind of appointments where we learned that she did indeed have a bilateral cleft lip and a cleft palate. The extent of the cleft to the palate was unknown and would remain that way until we would meet her in person. She would need surgery within the first three months of her life to repair her lip and then within the first 9 months of her life to repair her palate. We met her orthodontist, dentist, speech therapist, nurse, ENT, and plastic surgeon. All that for a little anomaly and then a scar!

Sadly for them but lucky for me, the professionals on our team gave me their phone numbers and email addresses. I bombarded them with questions about my little girl. These questions went from birth to our child at age 16. I anticipated every possible outcome. Every parent worries about these things at one time or another in their kids’ lives. I, however, had the unique opportunity to worry about all of it all at once before she was even born. My emails and calls were (and still are) famous in certain circles at the children’s hospital. I’m the mom who was asking about my child’s braces, nose, and speech patterns before she was even born.

People did not know how to talk to me. My social worker mother kept saying that everything would be ok, but it didn’t feel like it. My writer brother researched everything which was forbidden to me by the cleft team. My sister, the Emergency Room doctor, answered all of my questions as best as she could, but I quickly knew more than she did. My father, the Rabbi, tried to tell me that God had a plan but I was certain that this wasn’t true, and if it was then I was unimpressed. My mother in law kept calling me to cry and could not get over how this could have happened “to her”. My similar aged friends said that younger people had this happen so our old age might not affect their unborn babies this way.

I was pretty pissed at God but that didn’t stop me from praying every night. I wrapped my burgeoning stomach in a pink fluffy receiving blanket and prayed for my baby girl. I went through the list of realities and then the list of possibilities. I prayed that the realities would be something that we could handle and that the possibilities never would happen.

My hazel eyed, auburn haired, beautiful little Madeline arrived a month early. I think that she, like her poor dad, was tired of listening to my worries and fears. The medical reasoning was pre-eclampsia but I know better. I was tired of ME, that poor baby had to have been exhausted. As expected, Maddy had a bilateral cleft lip and as feared she had a complete cleft palate. That means that the better part of the roof of her mouth was missing along with there being a split where the middle of her nose and her lips should have come together. We didn’t know what to do but we knew that she was adorable. She was in the NICU due to being born slightly early and because she had to learn how to eat with a special bottle.

Maddy was 6 pounds and 9 ounces and was a NICU giant. Everyone on the unit wanted to work with her because of her giant almond shaped eyes, her fiery hair that could be shaped into a fauxhawk, and her spunky nature.

After the NICU, came our turn at Maddy’s care and feeding. Every time we met with the cleft team, we learned something new and challenging. The professionals always spoke so reasonably, but their instructions were so complicated and overwhelming. I dreaded the appointments because I kept expecting them to come up with something like dangling Maddy from the ceiling by tying her toes together in order to increase the blood flow to her mouth. Each appointment felt like an episode of “Survivor” where we received our next challenge. They always ended everything with, but the babies don’t mind. I always wanted to ask if the babies ever left them comment cards or if they had ever gone home with them.

Some of the more exciting challenges involved feeding her with a special bottle where we squeezed the milk into her mouth for her. We had to give her a retainer held together by nose clamps and denture cream and play the “how long until Maddy pulls it out” game. We had to tape her lip and thread it through the nose clamps until we discovered that this was just her surgeon’s aesthetic decision. After that we just stuck the tape on her top lip which she hated. After both surgeries we had to feed Maddy with syringes and keep her fingers and everything else away from her lip and mouth while she was teething. We needed to massage her recently operated on lip shortly after her surgeries, so we would press down on an area that was recently operated on for 30 minutes each day. These are just a few of the tasks before she turned one.

Since the two surgeries, she has had one lip and nose revision with an ear tube insertion. She has gotten a bridge to replace teeth that fell out around the cleft area. She will need a bone graft on her upper jaw, a rhinoplasty (free nose job for a Jewish girl!), possible jaw surgery, and revisions along the way. She is also heartbreakingly beautiful with an amazing smile that reaches her eyes. She has auburn ringlets and a petite frame. She is smart and sassy, loves to spontaneously sing and dance, and recites the words to several children’s books by heart. Madeline is being used in a video at the children’s hospital to showcase their good work and her fabulousness. She is so much more than her clefts.

And yet, I worry. I worry about bullying. I worry about her feelings as she learns about her cleft, and her and her baby sister’s relationship as they get older. I worry about her remaining surgeries and the possibility of her having even more than expected. I worry about her lip, her teeth, her speech, her nose. I worry that she will blame me. I worry like any other parent about what life has in store for her as well as for her sister, but being a cleft mommy just adds to the everyday mommy jobs and emotions.

What I know for certain is that Madeline will be just fine as she is an amazing little fighter and the strongest person that I know. I just need to work on her worrywart mommy.

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