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My guest this week is Taraneh, sharing her story about having a son with cleft palate. 

In this episode, we talk about…

[2:24] Taraneh’s background and her family

Taraneh is a nonprofit communications professional and writer who lives in the Bay Area, California, with her husband and two young children.  Her daughter is seven years old, and her son is three years old.

I connected with Taraneh through an amazing startup organization that empowers kids and families with health issues called Piper and Enza.  

[3:54] Taraneh’s pregnancy and birth experience with her son

When Taraneh became pregnant with her son, it just felt different from her first pregnancy with her daughter.  She felt like something wasn’t right, but by all accounts and testing, the pregnancy was normal and healthy.  Taraneh anticipated having a toddler and a newborn would be difficult, but the one thing she was confident about was breastfeeding.  She was able to breastfeed for two years with her daughter, and she planned to breastfeed with her son as well.

After her son was born, Taraneh tried to feed him and he could not latch at all.  The midwife took him to examine him, and she noticed that he had a little ridge in his mouth. That raised an alarm, but nothing more was said at that point.  They were moved from the labor and delivery room to the recovery room, and then a pediatrician came in to examine the baby.  She told Taraneh and her husband that she would have to take their son to the NICU.  He was a bit hypoxic, meaning he was short on oxygen.  She informed them that he had a cleft palate, and likely Pierre Robin as well.

[5:23] Cleft palate and Pierre Robin Sequence diagnoses

Pierre Robin Sequence is associated with a few different characteristics, and cleft palate is one of them.  The other signs are a small lower jaw and a tongue that is placed back further than it should be.  That combination can make it hard to breathe and hard to feed, and it can also make it more likely that the child can choke.  There is a wide range in severity when it comes to Pierre Robin, and Taranah was told that her son presented mild signs.  It was a lot of information for them to take in all at once, and they were still processing everything as their son was taken to the NICU.

While Taraneh had heard the term “cleft palate” before, she (like many people) thought of “cleft lip”.  Even now, when she tells people that her son was born with a cleft palate, they look at his face and say that they can’t see a scar at all.  Cleft palate is actually internal, while cleft lip is visible on the outer part of the lip.  In the case of Taraneh’s son, he had a cleft palate but did not have a cleft lip.

[12:35] Flexibility with feeding a baby with a cleft palate

After they had the baby settled in the NICU, Taraneh’s husband was able to go see him.  As soon as a baby gets a cleft palate diagnosis, they bring the mother a hospital grade pump to try to get the colostrum out and get it to the baby.  

Taraneh went into the mode of getting her son the nutrients he needed.  She was determined, but also emotional and apprehensive about what it would mean for her son and their bond if she was not able to breastfeed him.

When Taraneh was able to visit her son in the NICU, doctors informed her that they were able to get him oxygen and his prognosis was good.  He had a relatively mild to moderate cleft palate, and that took away some of Taraneh’s fears.  They do, however, keep babies with cleft palates in the hospital for a longer period of time because they feed differently.  They drink out of a bottle that has special venting, and their milk needs to be boosted with extra calories because getting enough calories into them is an issue from the beginning.  

While a week in the NICU feels like a long time, Taraneh describes it as a very educational experience.  They had a lot of specialists coming in, showing them how to feed their son, teaching them how to boost his calories, and teaching them about the best way to get that thicker milk into his belly.

At the beginning, Taraneh shares that she still held out hope that breastfeeding would work for them once they got home and her son got stronger.  In most cases with cleft palate, the baby is never able to latch.  

[15:40] Leaving the hospital and transferring care to a clinic

Fortunately, less than ten minutes from the hospital there was a national cleft palate clinic.  This clinic follows the child every year until they are 18 years old, and they provide access to additional resources such as speech therapy and craniofacial specialists like plastics and orthodontics.

They also came home with a hospital grade heart monitor and pulse oximeter that the baby had to wear for the first few months to check his oxygen.   He had to sleep on his stomach for safety as well.  Getting any milk into him was hard, and he also developed reflux.  Taraneh then had to try to find a formula that would work for him without making it painful for him to eat.

From the beginning, doctors told Taraneh and her husband that their son would have to be 20 pounds in order to have the surgery to repair his cleft palate.  Ideally, however, you want a baby with cleft palate to have the surgery before he reaches 16 months due to growth and developmental factors.

Taraneh recalls a perfect storm during this challenging time.  She knew she needed to get as many calories into her son as possible, but it was difficult to feed him, she wasn’t sleeping, and it was hard to produce milk.  Her son was not getting enough calories because he couldn’t take them in, and so he would just sleep.  Doctors told them they had to wake him up every 90 minutes around the clock to feed him, and for over a year they were keeping track of every milliliter their son drank.

For the first couple months, they also had a home health nurse coming to their home a couple times a week to check on him, weigh him, and work with Taraneh and her husband.  It was a great service, but it was also intense and placed a lot of pressure on them as new parents dealing with these challenges.  Their son did not start to hit his stride with weight gain until six or seven months.

Taraneh also had to go back to work eventually, and she did so with a lot of support from her mother, mother-in-law, and husband.  She also found a trusted person to take care of her son part-time, but he still had a lot of doctor’s appointments and other things that would pop up.  They were trying to figure out if his condition was isolated, because sometimes it presents other issues such as hearing loss, vision issues, and heart issues.  So with all of the appointments, eventually Taraneh could not balance it with work and she was dismissed.

[20:44] Taraneh’s son’s surgery

In order to do the surgery, Taraneh’s son had to reach 20 pounds and he also had to remain healthy.  They scheduled his surgery for June 2019, and they became focused on keeping his weight up and avoiding illness.  Her son had to stay away from other children, sometimes including his older sister.

The day before surgery, he weighed in at just a few ounces over 19 pounds.  Taraneh worried that maybe they wouldn’t do the surgery, but ultimately he was doing well and they decided to move forward.

It was not a totally straightforward surgery.   They did have a hard time getting his breathing tube in, and then they had to stop the surgery at one point  for suction.  The most scary thing that happened during the surgery was that they couldn’t get the anesthesia at the right level.  They were trying to keep it on the light side due to his size, but he woke up a few times during the surgery.  He stirred and thrashed around, and they would have to adjust the anesthesia.  The surgery that was supposed to take around three hours ended up taking four hours.  For the last 45 minutes, Taraneh was pacing a hole in the carpet because she was wondering what was happening and why it wasn’t done.  She wished she had been given more updates, especially at the point at which the surgery was supposed to be done.

Taraneh had support in the waiting room from her mom, husband, and two friends.  She was grateful that others were staying calm and steady as her anxiety increased.  Once she was able to go back to see her son, the anesthesia had worn off and the nurse was holding him.  His face was scratched up because of his thrashing during surgery, and that was hard for Taraneh to see.

Ultimately, Taraneh recalls this surgery and these moments as the beginning of the next chapter for her son.  She felt like it was the beginning of their life as a family of four being able to exist without as much fear and uncertainty as they had before.

[29:28] Surprising or unexpected moments from going through this experience

Taraneh says this experience has really helped her to see just how resilient children can be.  Even when her son seemed so small and helpless, she would see him smile through the pain and develop his hilarious little personality.  He was falling off the weight chart, but he was able to make his parents laugh and develop a bond with his sister.  That resilience and that spirit that children have through the most difficult experiences is amazing.

In the same vein, Taraneh shares that this experience has highlighted her and her husband’s resilience as well.   Even in moments where it felt so hard, they were a team determined to help their son thrive.  They rolled with the punches and they kept going.

Finally, the experience continues to give Taraneh perspective on her son.  He went through some hardships, but by all accounts he is a healthy child.  It makes her think of how hard it is for some families, and what they go through when presented with more serious diagnoses.  Taraneh has a lot of respect for families who go through any struggles with their children’s health at any point.

[31:39] How Taraneh’s son is doing now

Overall, Taraneh’s son is doing well now.  His speech was slightly delayed, but he is catching up quickly.  The COVID-19 pandemic slowed everything down, including his therapies and doctors’a appointments.  Now they are starting to get back into in-person interventions.

Recently, the speech therapist noticed that she is hearing a bit of air between his mouth and his nose.  She thinks there may be a small reopening in his palate, which is relatively common.  As bones grow and the child continues to develop, the repair may not hold all the way.  If doctors confirm that is the case, he may have to go in for a small repair when he is five or so.  They may also determine that it is small enough not to require surgery, so they are taking the “wait and see” approach for now.

Taraneh also admits that she parents him differently than she did her daughter, likely because of the things he went through during his first year-and-a-half of life.  She isn’t pushing him on potty training, and she lies down with him to go to sleep every night.  But he is also a typical three-year-old in many ways.  He goes to preschool, he is spirited, and he runs amuck in their house torturing his older sister.  

[34:22] Shifting priorities in the face of a child’s medical issues

When you have a child who is healthy, you may focus on different things like potty training and getting them to sleep by themselves.  Your priorities may shift, however, with a child who goes through these medical hardships.  Taraneh explains that she got to parent her older child on instinct.  She didn’t have that opportunity with her son for the first year-and-a-half, and now she has the gift of being able to parent both of them instinctively.  She is doing what feels right.

[36:08] What Taraneh wishes she had known before being thrown into the “medical world”

Taraneh shares that she did not previously realize what a magical place the NICU could be.  The compassion, care, and connection they formed there really held them up during difficult times.  She also wants more families to know about the resources that are available for them and their children.

Regarding her desire to breastfeed, Taraneh now looks back and thinks that she was a bit naive to assume that she would kick butt with feeding her son.  Even babies who don’t have cleft palates can’t breastfeed for different reasons.  If she had gone into it a bit less confident about that part and ready to feed her baby however he needed to be fed, being unable to breastfeed may have been less devastating for her.

[41:09] Piper and Enza: providing resources to support kids and families with medical issues

Taraneh has been an aspiring writer for a long time, and one of the ways she processed this experience with her son was to write about it.  When he was three or four months old, Taraneh started a motherhood blog called Mama June Chronicle.  She wrote about her experiences as a special needs mom, preparing for surgery, and all the milestones with her son.  She has been keeping that up for the last couple of years, and earlier this year she connected with a woman who read her blog.  She had an idea born out of the pandemic, as she was trying to explain what was going on to her kids in a way they could understand and process without fear.

They connected, and Piper and Enza was born.  It is a company that is working to support kids and families through the inevitable health and wellness experiences they will face in their lives.  Anything from getting a booster shot or a blood draw to having to go to the ER for a broken bone or dealing with a hospitalization or a more serious illness.

As a parent of a baby with special needs, Taraneh had access to resources like occupational therapy, speech therapy, and social workers.  Many families want their kids to have a healthy outlook toward healthcare experiences, and Taraneh and Rita are working to build out the community, source experts, and create these resources as a one-stop-shop for families.  It is their mission to provide developmentally appropriate tools, resources, toys, and children’s books that can support children through these experiences.

Piper and Enza:

Piper and Enza Website 

Piper and Enza Instagram 

Piper and Enza Facebook 

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