If you know me you probably know that my son was born with a cleft lip in 2007. To most, and especially in the eyes of the medical community, it is not a serious birth defect in the grand scheme of things as it is the second most common birth defect in the US.
But it felt serious to me.
Rowan’s cleft lip was undetected at our 20-week anatomy scan—you know, the scan meant to take measurements and ensure you’ve got a perfect baby growing inside you. Looking back at his ultrasound photos, the cleft is clear as day. I’m not sure how it was missed, even my midwife remarked after Rowan’s birth that she was shocked it was missed because she had adopted a boy with a cleft lip and was very familiar with them. To say his cleft was a surprise at birth is a huge understatement. It was shocking. It was surreal. It was everything I thought his birth wouldn’t be. Sometimes I still find myself wondering, eleven years later, if it would have been better had I found out at the anatomy scan. The way things worked out, not knowing, every single person in the delivery room was unprepared. I distinctly remember Rowan coming out with his hand up by his face and it wasn’t until he was completely out (so, a minute or two at the most but you know labor and birth does this weird thing to time where everything feels shorter or longer) that the doctor said to me,
“Oh. He’s got a cleft lip. Did you know about this?”
Blank stare and bewilderment. “What?”
Yes, I knew my son had a cleft lip but kept it a secret. Why….how…. could I know about it but it not me anywhere in my chart?
The days following Rowan’s birth is basically a blur with snip-its of conversations clear as day because of how emotional they left me. Plenty of moments like any new mom of staring at his beautiful face. Lots of crying….lots of hearing “thankfully it isn’t worse” and “at least it can be fixed” and “he’s still beautiful”.
The hospital staff was overall really great, though. They quickly gathered up specialists and made us appointments to see them there at the hospital. I quickly learned that his type of cleft was very rare. His was a bilateral cleft lip, and his palate was not affected, meaning he only had a cleft lip and not a cleft palate. It’s pretty unusual to have just a bilateral cleft lip. And neither myself or Rowan’s father has any known family history of clefts of any kind. We have no known Asian or American Indian lineage (the two populations with higher cleft rates). One of the doctors along the way remarked that the development of a baby is a miracle when you take into consideration all of the literal millions of things that has to happen for a healthy, normal baby to develop. Rowan just had a tiny little blip in his development and that didn’t lessen the miraculousness of it all.
Hours after Rowan’s birth, one of the lactation professionals in particular came in for a visit and was just what I needed—handed me a stack of papers she printed off about cleft lips. It was obvious she was notified of our situation and immediately got to work pulling resources and information. I saw that and it was exactly the kind of support I needed right then. The stack of papers sat on my bedside table for a few hours before I finally picked them up. But having the information there for when I was ready was perfect. She knew I wanted to breastfeed but she knew I wouldn’t be able to. She arranged for a breast pump, a Medela Lactina Select to be exact (isn’t it weird the details we remember?) to be brought to me and encouraged me to latch Rowan on to my breast as best we could manage as often as we could. She also gave me a nipple shield. She wasn’t sure if it would help, and she was very forthcoming with the fact that she had no experience working with a cleft affected baby but she was going to do everything she could to help us.
Sometimes I wonder if knowing about Rowan’s cleft before his birth would have changed anything or if would have just made me worry and anxious for the remainder of the pregnancy. I’ll never know but I trust that things happened the way they did for a reason.
Due to his inability to latch, and struggles with gaining enough weight, Rowan was mostly formula fed. There’s a beautiful poem about being a special needs parent that someone along our journey shared with me and I still read it every now and then and send it to others who may need to read it. It is called Welcome to Holland. My first pregnancy wasn’t picturesque—I was 18, single, and unsure about my future. It wasn’t what I pictured my first pregnancy and childbearing experience to be. I breastfed my oldest for a couple of weeks, went back to work, and pumped until he was 3 months old and then switched to formula. So when I was pregnant with Rowan, I knew things were going to be different. I was married, comfortable, had a secure future and I was determined to breastfeed for at least 12 months.
Welp. The universe had other ideas. I had planned a trip to Holland but definitely didn’t end up there.
The stressors of having a cleft baby with medical appointment after medical appointment was enough to send me into some kind of depression. Combine that with Rowan getting RSV at four weeks old and being hospitalized on oxygen for almost a week, then being discharged with an rx for an oxygen tank we had to tote with us (yes, to all the weight check, pediatrician, plastic surgeon, and dental appointments), pumping was basically on the bottom of my list. I felt like my head was barely above water. I felt like no one on earth could understand what we were going through. Even though we were literally surrounded by tons of people, I felt incredibly alone.
We switched to formula sometime in the first months but I pumped occasionally giving him whatever I could pump when I felt well enough to pump. The details are blurry. Our goal was for Rowan to gain enough weight to have his first surgery. If I recall correctly, the surgeon needed him to double his birth weight (he was about 8 lbs 5 oz at birth) and he was having a very difficult time gaining weight on just my pumped milk. By the time he was 3.5 months old, he was on formula full time. As we prepped for his surgery, which is a whole other story worthy of it’s own post, I was curious if breastfeeding afterwards was an option. I cautiously asked the team of doctors what they thought about it, thinking they’d think I was weird or silly for even asking. To my surprise, they were totally supportive of it. They said we could try breastfeeding as soon as Rowan was out of surgery, stable, and alert enough.
Because I had pumped for those three months leading up to his surgery, I was still producing milk albeit not much. With the guidance of my LC, my OB gave me a prescription for Reglan. (I want to note that this was in 2008. I don’t think Reglan is used for relactation purposes any longer, or at least it isn’t as common now. I was screened for depression as it is a common side effect of Reglan. And like many other mothers, when asked if I felt ok my reply was always “yes, I’m doing great”…. I wasn’t. But again, that’s a story for another time.) I was instructed to go back to pumping every 2-3 hours, and to purchase a SNS orSupplemental Nursing System.Also, I was to comfort nurse as much as my son wanted, and to attempt to latch him and breastfeed him on demand prior to offering him a bottle of formula. I discovered babywearing at this time and often wore him around the house while topless. We struggled. And we struggled a lot. And there were numerous times that I wondered if it was worth all the agony and pain and frustration.
I knew that eating from a bottle was much easier for a baby than nursing at the breast. Babies don’t really have to work to get the milk flowing from a bottle, it just happens thanks to gravity. And there was no “paced bottle feeding” back then—something we teach to our clients when they intend to use a bottle. At the breast, however; babies have to work their jaw and mouths in a different way to initiate let down and the flow of milk from the nipple. It is why a lot of times babies get exhausted from breastfeeding. It is hard work! When we initiated breastfeeding post surgery, it started with the use of the SNS filled with formula. We really had to work on getting a proper latch because he didn’t have the same muscle function in his top lip that other babies did, even post-surgery. Once we felt his was sufficient enough, we tried breastfeeding without the SNS. Within seconds… he would become frustrated and upset because he couldn’t get the milk flowing quick enough; he had become so used to the bottle and even the SNS. It took countless attempts over several days for him to realize he had to work a bit harder. Thankfully babies catch on quick! They are pretty smart.
I can distinctly remember the first time he latched on and stayed latched and nursed. And he nursed for several minutes. And I cried. Oh man did I cry. And after I cried I celebrated. I was so overjoyed and so filled with pride and relief. I won’t ever forget that moment and I’m so incredibly thankful for it. We continued to work on our breastfeeding journey and we were able to keep it going for a little while, still supplementing with formula the entire way. Eventually the pumping and the latching, relatching, and relatching again wore me (and him) out. And we switched completely over to formula. We were happy, and relatively stress free. It felt freeing. I had got him to feed at the breast, more than once! My goal had been breastfeed to at least 12 months, and then it had to be changed to “just get him to breastfeed”. And we did that. It was a the best damn feeling, too.
I know first hand how very hard it is to breastfeed a baby. I’ve done it four times, with one being a very unique and different experience. I’m glad we did what we chose to do. I am thankful for formula and you won’t ever see or hear me judge a mother for not breastfeeding. When I tell this story to people, sometimes they ask why I didn’t choose to use donor milk. I didn’t know of donor milk back then and no one had ever mentioned that option so I didn’t even think to explore it. And that’s ok. We all only do the best we can with the information we have. If I were in the same situation now, I don’t know if I’d do things differently. I may skip pumping and latching all together and go straight to formula. Or I might work my ass off to be an exclusive pumper. Or I may do donor milk. I don’t think any of us knows exactly how we’d react in a given situation until we’re in it.