Our Story {Cleft Palate & Hypoplasia}

Before my husband and I had even started trying to get pregnant, I assumed I had it all figured out. I’d have a home birth. I’d breastfeed. And we’d have a perfect beginning bringing our perfect little baby into the world. You know what they say about assuming…

My pregnancy was pretty much picture-perfect. It took us no time to get pregnant once we decided we were ready. No time, as in, we decided on July 25th, and I was pregnant by August 1st. What could be better? Right on schedule. Just as it should be with a woman so focused on everything being in its right place at its right time.

All went well with the pregnancy. We heard the baby’s strong heartbeat on our first visit at 12 weeks. Morning sickness ended as I made it into my second trimester with no vomiting. All my blood work came back perfect. No gestational diabetes. I gained the right amount of weight based upon my size. Baby girl was head down when the time came. We had this. We were ready.

Fast forward to 3 days following my due date. Mild contractions started while I was at work that Friday. I took a few walks around the building. Then I called my husband, Keith, and we decided it was probably time to head home for the day and start getting things situated. This baby was on her way, and we needed to prep our home for her arrival.

My contractions had become gradually stronger by late evening as my friend Michelle arrived to check on me. Michelle, having had two home births (and one birth centre birth) confirmed this was, in fact, probably the real deal. I went over my plan in my head: “I call Angie (our midwife) for 3-1-1. Contractions are three minutes apart, lasting one minute and have been happening for one hour.” I didn’t qualify yet. We were settling in for the night. My husband, Michelle and I all headed upstairs to the bedroom.

All evening, Michelle and Keith took turns timing contractions. By midnight, I called Angie and informed her they were getting stronger, but still only 5 minutes apart. She inquired as to how I was coping and kept me on the phone through a contraction. I told her I was doing okay and could probably wait for her to come.

By 7 a.m., Angie came by to see how I was progressing. We had agreed early on that I did not want to know about my progress by how far I was dilated. I had heard too many stories of women getting frustrated and discouraged as they tracked dilation. I trusted Angie to keep encouraging me no matter how far I was (or wasn’t) along. Angie confirmed I was in active labor and that I should lie down and try to get comfortable, as this may be my last chance to do so. Angie had to run out for a bit, but said she would be back soon.

Shortly after Angie left, a strange sound came from our master bath. Keith was taking a nap in the spare bedroom, and Michelle had just came out of our guest bath when she informed me…there was no water. Did I mention I was supposed to have a home WATER birth? Um, yeah.

By noon on Saturday, my contractions were serious business. I discovered I really liked the counter in our master bath to hang on to as waves of contractions swept over me. With a pillow on the counter, I would sway back and forth as a contraction came on, lean the top half of my body over on the counter and I would plié through each wave. Deep moans accompanied each contraction. I laughed when Angie tried to get me to practice this guttural, animal like moan pre-labor, but in those moments, I was super thankful to be able to vocalize that way. It helped the contractions seem less intense and overwhelming, even if I did sound like a dying moose.

Finally, after flushing the toilets all day with pool water and using tons of hand sanitizer, the water came back and we were able to fill the tub. Following a nice, intense contraction, I vomited and held out hope that I was transitioning (whatever that was supposed to mean at this point). However, it appeared that the heave was only the result of choking on a piece of fruit right before that contraction. I was done eating anything no matter how much I needed to keep up my strength. Yuck!

Just as the sun had risen that Saturday morning, it began to set on a still very pregnant, laboring woman. We had turned all the clocks around so the light peeking through the blinds was my only indication as to the end of the day fast approaching. We’d tried it all, all day long. Laboring on knees (ouch), squatting (nada), laying on my side (no way), shaking the apple tree (ugh) and even my most favorite of all, inversions (kill me now). The water would be the answer, right?

As I crawled in, the warm water helped relax me a bit. First laboring on my bottom, then leaning over the side. And as the sun was setting, I looked around our bedroom. Everyone was sitting in our dimly lit bedroom, waiting. “For what?” I thought. “Transition? What does that look like for a first-timer? I mean, I know it’s when I’m getting ready to push, but for heaven’s sake we’ve been doing this for almost 24 hours now. Will that EVER happen?” So I looked to Angie. “What do I need to do to get things moving?”

“Get out of the water,” she said. And so I did. We headed to the stairs. Two at a time, I took those stairs. I leaned on a wall, lifted my belly, thrust my hips out through contractions. We sat me on a stack on pillows and inverted me through multiple contracts. Nothing seemed to do the trick. And at that point, with one last vaginal check, my midwife said, “I think we need to go to the hospital.”

The baby’s heartbeat was fine and so was mine; she just wasn’t coming down. I had been stuck at 6cm since 2 p.m. At this point, it was 10:30 p.m. Thankfully, I’d had enough sense to pack a hospital bag ahead of the time, just in case.

Once we arrived at the hospital, we parked and began walking in. (We still laugh about the fact that we were all so out of it that no one thought to drop the woman in labor off at the front door of the ER.) Angie prepped me for what was about to happen. They were going to tell me I needed a Cesarean Section. I did not, she told me. And I had every right to refuse one.

After the dirty looks and whispers that followed “she’s a transfer from a homebirth,” we were up in labor and delivery. And, we have to add some icing to our cake here, there was no air conditioning. Did I mention we live in southern Florida? Yeah. So, when the doctor arrived, any guesses what his first suggestion was? Yep. “Let’s section her.” I asked nicely to please be given the opportunity to deliver vaginally with some augmentation. Epidural followed by a little Pitocin. (Props to all the moms who delivered using Pitocin with no epidural. You are braver than I.) He said sure…“but you have one hour to progress. No progression and we will give you a c-section.” Thanks for the support, Doc.

As they called the anesthesiologist, one of the nurses informed me that they were going to work hard to get me the vaginal birth I wanted. They were going to get the doctor to give me more time. There is no doubt that God orchestrated those nurses to be on duty that night, just for me and my little girl. And once we got the epidural in and the Pitocin to follow, it didn’t take long before I was ready to push.

An hour and a half of pushing, and into the world came our little girl, beautiful and well. We placed her on my chest to give her the chance to get her first sip of my milk. But she didn’t latch. “Okay, it’s okay. It may take some time,” I thought. My very knowledgeable and skilled midwife placed her pinky finger in my baby’s mouth. “She has a tongue tie,” I was told. That’s fixable. I know others who have had babies with tongue ties and they were able to nurse. Awesome. We’ve got this.

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Later that day we were wheeled to our room and everything that ensued in the hospital was everything that I dreaded. People in and out all night. The paediatrician trying to tell me I needed to use formula because my milk wasn’t in yet (she was less than 24 hours old at this point!). A million untrained nurses trying to help me to get my daughter to latch. A volunteer telling me I was holding my baby wrong and that was why she was crying. All the things a first time mom doesn’t need to hear in a place she never wanted to be. Thankfully, we had her tongue tie taken care of later that day and she seemed to be able to latch (with a nipple shield,) and we finally headed home.

That first night home was supposed to be sheer bliss, right? She screamed on and off all night. What had happened to our sweet baby? What were we doing wrong? By morning I was calling my mom telling her to get in the car NOW and start her drive from Ohio to Florida. I called a friend, begging her to just come hold this baby so I could sleep for just an hour (I hadn’t slept in 4 days).

On Wednesday afternoon, three full days following my baby’s arrival, we sat down with Angie. Our little girl had lost a pound and an ounce. She was jaundice. And clearly, she wasn’t eating right, with all the crying and whatnot. So, Angie, an established breastfeeder, asked how I felt about wet nurses. “Whatever it takes,” I said. “We just need to get food in her and figure out what is wrong.” Angie tried to get her to latch. Then her assistant tried as well. No dice. And as my baby cried in my midwife’s arms, Angie peered into her mouth. As she looked intensely in between those little, hungry lips, I asked what was wrong.

“She has a cleft palate.”

What followed was a lot of tears and confusion. Why did no one catch this? Two paediatricians saw her and no one realized she had a hole in the roof of her mouth? How could we have missed this? No wonder she’d been so fussy; she hadn’t eaten since she was born.

Babies with cleft palates can’t create suction. Imagine trying to drink from a straw with a hole in it. You’re sucking but you get nothing. She’d not had anything in three days and I, the first time mom who wanted everything to go so perfectly, had managed to starve her baby from the get go.

First order of business, get food into the baby. I would have never dreamed of using another woman’s breast milk to feed my baby. But that’s what we did until my milk came in. We fed our baby via eye droppers/syringes. They were long feeding sessions, but she was getting food, finally. And as I became attached to a breast pump, we were able to sustain her on my milk alone…for a little while.

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For some reason, no matter how much I pumped (once every two hours, once every hour, etc.) I couldn’t get more than two ounces total. I ate steel cut oats. I had a friend make me a batch of lactation cookies. I took fenugreek (mmm, maple!). I power pumped and massaged. Warm compresses and goat rue herb. Nothing worked. Nothing increased my supply. And so, with the milk I could get, along with my friend Rebecca’s milk, we sustained my little girl on breast milk alone, for 6 weeks.

At our 6 week appointment, Angie informed me that I have something called Hypoplastic breasts. Essentially, underdeveloped breast tissue caused me to be unable to produce sufficient milk for our baby. I thought that the reason I couldn’t produce enough milk was because she was never able to breast feed. A baby does a much better job at draining a breast than a pump, and with that I thought I just needed to work harder and pump more. Not so. I may never, even with a baby that can suck, be able to produce enough milk to sustain a little one on my own. I may be able to do 70% of the work, but probably never 100%.

As I heard those words, the pain and exhaustion, the frustration and confusion drove me deeper into the beginnings of what I later found out was postpartum depression. And wasn’t it fair that I was depressed? My daughter was supposed to be born at home. She was supposed to be healthy. I assumed we would breast feed. And if I couldn’t, I assumed I’d pump exclusively. Remember what they say about assuming? Nothing went as planned. And it felt like everything was truly falling apart in those first few weeks of our lives.

With a lot of support and love, my postpartum depression is all but a distant memory. I still have days when I’m angry or frustrated. I had to stop following Le Leche League posts in my area on Facebook because it was nothing short of torture for me. It’s hard to listen to people bash formula feeding moms when I have a legitimate reason for doing so. It’s even harder to hear women talk about the joys of breastfeeding and how perfect and wonderful it all is. I wish we could have had that, but we didn’t. We fought hard to breastfeed and then pump, but we had a lot stacked against us. But it’s okay. We are okay. And other moms need to know…IT’S OKAY.

If things didn’t turn out as planned, it’s okay. You’re not a bad mom. Do you love your baby? Do you feed them formula because you couldn’t breast feed? It’s okay. Do you cuddle your baby and kiss her each day? Did your hospital birth end up with interventions? It’s okay.

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My daughter will be a year old next week.  She is a beautiful, smart, short-fused little wonder, and I wouldn’t trade her for anything. She had her cleft repaired and tubes placed in her ears back in December. She’s healed perfectly. Gone are the days of feeding her upright with a special bottle and milk/food coming out her nose. And while she may (or may not!) need speech therapy or orthodontics later in life, overall, she’s a pretty normal kid…well as normal as you can be with a mom like me.

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At the end of the day, my husband and I should have known this would happen. We should have known that things would have been so over the top ridiculous, from a home birth transfer, losing water, no air conditioning, tongue tie, cleft palate, jaundice, hypoplasia to postpartum depression because come on, you can’t name your baby “Story” and not expect one to accompany her. We love our little girl, Story Jane, more than words can describe, and she was worth every assumption that went awry. She is the exact baby we were supposed to have “for such a time as this” (Esther 4:14).

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19 Comments

  • Storie Giddings

    I love your daughter’s name! My name is Storie Lynn. I did not like my name growing up because it was so not normal. But I love it now! In fact I’ve named my 4 kids “not normal” names cause I want them to be one of a kind. They are Anthem, Solace, Beckon, and Banner (boy/girl twins:)

  • Melissa

    I can’t believe no one caught that! Not even when they repaired the tongue tie. My sister was born with a cleft palate too. You are so strong for going through this journey.

    By the way, my sister never needed speech therapy or orthodontics. She’s now 18 and serving in the U S Army reserves.

  • Shannon

    Thank you for sharing your success story of overcoming the obstacle of cleft pallet. You are a strong woman to endure hardships and still have faith. May I ask if she ever had a prosthesis to help with that before the repair? I ask because 33 years ago I was born with a cleft pallet and could only eat through chest tubes. That prosthesis which now helps children such as yours was developed by my doctors for me.

  • Rachel

    Wow, what a story (so to speak)! I had a homebirth-transfer-to-hospital birth as well. Reading your experience was so familiar. My midwife was as amazing for me and my daughter as it sounds like yours was for you. Beautiful little one!

  • Danielle

    Wow, do I feel this one. Everything I assumed would happen, went almost the exact opposite way. Still had the unmedicated vaginal birth, but with almost every other intervention in the book, Class III Lip and Tongue ties, low milk supply (confirmed by LCs), and of course, PPD. Thanks for sharing your story, it’s sooo nice when someone “gets” what you’ve been through.

  • Alaina

    My baby girl was born with a cleft palate as well. I understand the heartache of that, and feeling endlessly tied to a breastpump when you wanted to feed her yourself. She will get her palate corrected a week after her first birthday in May. It’s reassuring to know your daughter healed successfully and that you’ve both made it through such an ordeal. Loving thoughts to you and your family. ♡

  • Maria

    despite all osbsticles you made it! Congrats on your first year as a badass momma! I love your strength and you are soo right! It’s time the bashing stopped! moms should be supported, bc we make them for the good of our family at the time with the knowledge we have. <3 you did everything right, every moms journey is different. We are all unique and rightly so.

  • April Davis

    I love this post. You are so amazing to have gone through all that-it’s really hard to change plans in the middle of everything and you had to handle that over and over!! Sometimes I think we have challenges like this in our life so we can help other people going through the same thing and you posting this is doing that!

  • Kim

    Thank you for your story. I can relate in so many ways. My daughter is 2 months and has a cleft palate. Along with the cleft palate she had to have a mandibular distraction due Pierre robin sequence. The hospital where I delviered only caught the cleft palate so we were sent home after a couple days with me pumping and using a Haberman bottle. Feeling heartbroken that I couldn’t nurse her like I did my son and that she had to have cleft palate surgery I thought it could be worse. Well it got worse! My daughter only home for two days and stopped breathing. Next thing I know my husband is giving CPR and I’m on the phone with 911. After that here we go to the hospital and are admitted. Next thing I know she’s hooked up to every machine you can think of and on her way to surgery. She will have her fourth surgery this winter to have rods removed from her mouth then at 15 months her palate will be repaired and maybe another surgery as a teen related to the mandibular distraction. Things will be fine so day. Thank you for your story, it helps moms like me more than you. As upset as I am that I can’t nurse her and my supply gets lower every day even with fenugreek etc… And I know I will have to supplement at some point that she won’t nurse for 14 months like my son did and that was because he decided to wean himself. The important thing is my daughter is breathing on her own and will some day have a normal life.

  • Kristi

    Thanks so much for sharing your journey. You had the plan I currently have. I am the exact kind of person that the universe loves to mess with in the most important of situations to see just how strong I am. I have two wonderful midwives and plan on trying a water birth at home. I’m not counting on water being my exact birth. Every woman says that different things worked for them than expected. So I am leaving my mind completely open to allowing things to go as they go. I just hope beyond hope that I don’t have to go to the hospital! But it means so much to hear the story of someone who’s experience did not go as planned and for them to say that it turned out ok. Your baby is beautiful and healthy and that is all that matters. Thank you again.

  • Leah

    Thank you SO much for sharing your story!!

    I am 37 wks with my second baby girl. It’s been fairly uneventful so far.

    My first pregnancy and birth were also good and we only had a couple minor scares (mostly due to obscure “potential complications” that turned out to be nothing). Labor was smooth and basically how we planned, however, breastfeeding was a painful and emotional battle. Nurses insisted that I supplement from day 1, because my milk had not come in yet. I didn’t know that was normal for many woman. We supplemented and I felt like a failure as a woman because I was only able to pump mere drops at a time… I didn’t know those drops were full of everything my sweet girl needed. I didn’t know that skipping nursing, in order to feed formula, could impact my milk production further.
    I didn’t know breastfeeding could HURT so much! Literally. Worst pain in my life (and I delivered without medication).
    The hurt was much deeper than sore nipples though; I didn’t understand what I was doing wrong. Why was a failing at this? The lactation consultants came in twice to help, but I still had painful latches. I went home with pressure ridges on my nipples and a diaper bag stocked with formula.
    6 weeks of painful nursing and supplementing when I just couldn’t handle it. Low milk production. Somehow the pain eased after the 6 week mark, but I still had to supplement to keep up with her demand. I continued breastfeeding for 9 months, but was having to use formula so much when I returned to work that I gave up at that point. I’m glad we lasted that long, but I had so much guilt over using the “big bad formula” and shame over not being an adequate woman and mother who could provide for her child…
    This second pregnancy has been a lot of me focusing on making it a better breast feeding experience, being armed with information and preparation. However, I realized that I need to move past the shame that I’ve carried around related to my first breast feeding experience. Babies need to eat- just like all people. I fed my child. I know it wasn’t exclusively breast milk, but that doesn’t matter. What’s important is that she was nurtured emotionally and physically. Loved. Cherished. Her tummy filled and her heart as well.

    I so appreciate you sharing your experience because it has brought me comfort going into the next leg of my motherhood journey. Breastfeeding is awesome, but it’s not what defines us as mothers.

  • Carmen

    thanks for this. I have a bilateral cleft lip and palate. I’ve heard stories about my birth and the challenges my parents experienced upon meeting me (and my not meeting their expectations). I was convinced I would never have children of my own because I didn’t want to risk having a child with a cleft too. I didn’t know if I would be able to provide the support and tenderness and compassion. I had my third child in November. None have clefts but all have had tongue ties. But from the moment I met my daughter i knew that it wouldn’t have mattered. Nothing can stop the love I have for my children. Thanks for sharing your story as it was heart warming and reassuring.

  • Goldie Rose Rosal

    Hi, I am also born having a cleft palate. I am now 25 years old.At start my parents also felt the same way as you. It’s really hard being like this because of how you will communicate. I haven’t gone any surgery. Basically, we are not that equiped in my country.

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