“This story begins in 1930 when a little girl was born and her appearance was a complete surprise, and considered shocking. She didn’t look like her older sister or any other member of her family or extended family. She was born with a unilateral cleft lip and partial palate. The surgeries to repair her lip and palate were done at a hospital miles away without her parents because, in the Great Depression, there wasn’t an option.
This beautiful sweet girl grew up to be a nurse turned stay-at-home mom. She left nursing for the ‘best job in the world.’ She was a wonderful mother who became a deeply loved grandmother. She was my grandmother.
You see, these medical terms, cleft lip or cleft palate are not new to me. My grandmother lost hearing in her left ear from all the ear infections she had as a young girl because of her cleft palate and wore a hearing aid. She had a barely noticeable scar on the left side of her lip that went up inside of her nose, which is remarkable for plastic surgeons at that time.
Cleft lip and cleft palate are birth defects that can occur by itself or can be part of a genetic condition according to Mayo Clinic. Some birth defects are hereditary, and some can skip generations in a family. My great-grandmother was told that my grandmother’s children could be born with a cleft lip and/or palate. No one in our family was cleft affected, until my youngest son was born.
I remember the start of this journey; this is one of those days that I remember so vividly. It was February in Michigan and it had snowed the night before. I took the day off to accomplish a day full of annual doctor and dental visits. I planned on going to the OBGYN, the dentist, and to get a physical from my primary care doctor. I only made it to one appointment that day, the OBGYN. These appointments when you are not pregnant, typically go the same every time, leaving a urine sample, answering some questions, talking to the doctor, and then you are on your way. Not this day—God had other plans!
I left the urine sample and waited to see the doctor. My doctor entered the room with a very serious look on her face and told me I was pregnant! My husband and I were not actively trying for another baby. As a matter of fact, I was taking birth control pills. My oldest was a little over a year old and we were finding our groove as a family of three. My jaw dropped and I asked her if she was joking. She said, ‘Unfortunately this is not something I am even allowed to joke about.’ That’s when the tears came–tears of shock.
The next question out of my mouth was, ‘How does this happen?’ Which after I asked it, I realized what I’d asked, and we laughed. I then explained that I didn’t understand, I was on birth control and recently getting off some anxiety medicine because of the side effects. The side effects consisted of horrible headaches, always feeling tired – excruciating tiredness, nausea, and increased appetite. I’d been pregnant before so surely I should have known, but I didn’t.
I left the appointment that day with ultrasound pictures of my 14-week old baby. Yes, I was in my second trimester! After telling my very shocked husband and sharing the news with our parents and close friends, we were excited.
Just a few short weeks later we went in for the 20-week anatomy scan. Because of my family history with cleft, just like my first pregnancy, I gave the ultrasound tech a heads up and we proceeded. We saw our son’s sweet face, arms, legs, and found out we were having another boy. We left with some great ultrasound pictures and went into an exam room to go over everything with our doctor–this is typical after the 20-week scan to talk about the ultrasound, go over any questions and talk about the next steps.
Again, my doctor came in with another serious expression and said that the ultrasound appeared to show that this sweet boy had cleft lip and possibly palate. To what extent she was unsure and couldn’t tell from their ultrasound machine. She was going to refer us to a local cleft team, or we could go to one of the best craniofacial programs in the state of Michigan at the University of Michigan. We didn’t even look at each other and told our doctor to put in the referral for the University of Michigan which is 2 hours from our home.
We walked out of this appointment in shock again! I called my mom in the car on the way back to work crying. I was happy to find out our baby was relatively healthy but everything else was totally unknown. My husband and I tried to look at the ultrasound pictures to see if we could see anything, but we had no idea what to look for. We didn’t know what to expect but we knew no matter what we’d love this baby boy, we already did. Nothing could change that.
Once you get referred to a specialist program team, there is an overwhelming slew of information thrown at you. In our case, it was ultrasounds with special machines, multiple appointments, booklets, leaflets, one-pager informational sheets, websites, and so many questions for us to answer. ‘Completely overwhelmed’ doesn’t even describe how we felt.
I remember at one of the ultrasound appointments they took special measurements and we were told that his brain and heart looked good, but his neck fold measurements could mean another type of genetic syndrome could be present including Downs Syndrome. We could opt for additional testing if we wanted, but we chose not to just as we did with our oldest son. For us, there are no results that would have made our love for this baby any different. God had a plan for this baby and no test result was going to change any of that.
The ultrasounds give you a pretty good idea of the type of cleft–unilateral or bilateral. Unilateral, like my grandmother, meaning one side of the lip is affected. Or bilateral like we found out our son has, meaning both sides of his lip are affected. The palate can be difficult to identify on ultrasound, so that was a waiting game until he was born–we were told it could be complete or incomplete. Complete meaning he would have no palate at all or incomplete meaning only part of the palate is affected.
Our son was born 8 days after his due date by induction at a hospital in our hometown. He was born with a bi-lateral cleft lip and a complete cleft palate. He has openings from each nostril into his mouth and no palate. Take your tongue and run it on the roof of your mouth. Our son doesn’t have a ‘roof of his mouth’ right now. His upper jaw is also in 3 separate pieces. Our UofM cleft team told us if he could eat, he wouldn’t need to go to the NICU. We were given Dr. Brown’s Special Feeder bottles designed for cleft babies to take with us to the hospital to help him eat.
Our local hospital told us that we couldn’t use Dr. Brown’s bottles which they never used, but instead we were to use the Haberman bottles they had. The Haberman bottles were difficult to use and our son had trouble feeding with them, so he was taken to the NICU for 5 days. Those days were long and frustrating made more difficult by a rounding doctor with little knowledge of cleft babies who insisted our baby’s milk intake be increased at an unobtainable volume.
Our NICU stay was shortened and we got to come home quickly because of two things.
1) During the last few days of our son’s stay, his NICU nurse was a family friend that I’ve known my entire life. She requested to take care of him. She was a wealth of knowledge, encouragement, and an advocate for our son. Be sure to find that one nurse who listens to you and understands the situation. You need that advocate. I get tearful typing this because she means SO much to me.
2) My husband is an amazing man and dad. He had a conversation with the rounding physician about the volume expected, feeding tube expectations, and finally getting approval to use our Dr. Brown Special Feeder bottles. He was so tactful, respectful, and firm. After that conversation and the bottle change, our son was released to go home the next day. This is one of the many reasons I love this man so much.
We got to enjoy this sweet new baby as a brand-new family of four before the doctor appointments began. My oldest absolutely loves his little brother and has referred to him as ‘his baby’ since we brought him home. God is SO good and I am a lucky momma!
When my son was two weeks old, we started weekly appointments with our cleft team at UofM who was two hours away. At the first appointment, we had a choice to make. We could tape to pull together the skin before lip repair or to use a retainer type device called a NAM or Nasoalveolar Mold. We chose the NAM because it would also help push back the centerpiece of the jawbone. This device would require weekly visits where it would be tailored and adjusted to slowly move bone and tissue into place before surgery. Part of this process also includes nasal stents. They are added to help shape the nose; my son cried for hours after these were added.
I chose to stop using the NAM after 10 weeks. It’s a hard decision to make when you are already trying to do your best to be the best advocate and you don’t know if you’re failing your child at the same time. Our surgeon told us that, in his opinion, the outcome would be the same whether we chose to do nothing, or if we just taped, or used the NAM. God blessed us again when we were placed with our surgeon. He has 26 years of experience in repairing cleft lips and palates… He is a perfectionist and will do whatever it takes to get good results for our son in the OR.
January 22, 2020, was supposed to be our son’s lip repair, but he contracted RSV at Christmas and because of the toll RSV takes on babies’ lungs, the surgery had to be rescheduled to give his lungs time to heal. It was rescheduled to March 17–St Patrick’s Day! Because of the medical costs both doctor and hospital, we decided to do a T-shirt fundraiser to help offset some of our expenses. We were surprised and humbled by the support we received from family, co-workers, and friends who ordered the green T-shirts with a special message in support of our son to wear on surgery day. We were so excited for this day because it’s supposed to be lucky, right? Well, not when a global pandemic hits.
March 13, my husband received a call that surgery was canceled because of COVID-19 and the new restrictions at the hospital. They did not know when surgeries could be scheduled again so they would call us and let us know. On March 13, I cried really hard for a long time. But a momma’s job is never done, so in typical fashion, you pick up and move on while also waiting as the weeks pass by. At the end of April, the surgery team called. They were allowed to schedule urgent/emergent surgeries, that if not done, would affect additional care for our son. Surgery was scheduled for May 5 but only ONE parental guardian was allowed inside the hospital because of COVID, period. There was no question that I would be the parent to go and be with our son through this.
There are no guides for ‘How to Successfully go through Surgery during a Pandemic Alone with a Baby,’ but there are best friends, family, and other cleft mommas who will help carry you through. I met a cleft mom at the beginning of my journey and her son had just had palate surgery before the pandemic started. She has always been the calm to my storms and a wealth of knowledge. She sent me a care package and gave me peace before this surgery. My best friend listens to all my mom worries, stupid stories and sent us Lucky Leo the bear who came with us to the hospital.
Now more than ever I would have loved to ask my grandmother or even my great grandmother so many questions, questions I ended up asking my mom. While we didn’t have the answers, we could talk about it all. I had to efficiently pack everything I’d need for the possibility of a couple of days and load it all on a stroller with an 8-month-old. Surgery day was bittersweet. I had to say goodbye to his sweet wide smile and hug and kiss my husband outside of the hospital in masks. I walked into a completely different world.
I held it together after the nurse carried him off to surgery until I got down to the café. When I sat down all alone with my mask under my chin, I ugly cried into my sandwich. The surgery lasted about 3 hours and I got called pretty quickly to the recovery area. Before going in, I texted my best friend that I was going to either puke or soil my pants because I was a ball of emotion. She was very reassuring, and we laughed together. I needed to refocus and calm myself and she helped me do that.
No one warns you about post-surgery. Your baby doesn’t smell like your baby, they smell sterile and sharp. Your baby doesn’t look like your baby, they are bloody and swollen. I was also alone, no one to hold my hand or help me get what I needed for myself or for my son from the diaper bag. There were so few nurses and staff in post-op I had to slowly slide to the end of the rocking chair and scoot the stroller over by my side with my foot so I could pull formula out to try and feed my baby. The hospital does not provide formula or bottles so that was all on me.
My son had lip adhesion surgery, meaning all the lip tissues are stitched together to pull his jaw back and together to prepare for the final lip surgery. The final lip repair is happening in August. Finally, 3 months after lip repair then the palate repair will be done. We spent one night in the hospital and came home to heal. The days after surgery are long and the nights are longer, but you get to go home. Your baby will regress to newborn sleep and eat patterns but that is totally normal.
Their nose will smell really bad for a while and that is normal while it heals. Your baby has to learn to eat again, this is normal too. Be patient with yourself and your baby after surgery, especially dealing with the stress of a healing baby AND the stress of a pandemic. No one before us has gone through surgery with a baby during a pandemic, you’re probably the first of the people you know. With everything else that is going on in this world, just remember to be kind.
My son’s journey isn’t over, but neither is this pandemic. If your family just found out about a cleft diagnosis, please know it’s okay to cry and be scared, but please don’t let this steal the joy of your pregnancy. Take and cherish pictures of the sweet cleft smile before surgery and love on that smile you know, but please know that the sweetness you get to fall in love with again after lip surgery is amazing.
Your family was chosen for this baby, you were chosen as their momma, you are strong, you are courageous, and you are an advocate. 1 out of every 700 births someone is born cleft strong. To the families facing the surgical road ahead with uncertainty, you are not alone! The road ahead of us is still long but we’ve made it over the first hump, and we made it Cleft Proud and Cleft Strong!”
This story was submitted to Love What Matters by Sarah B. Follow her journey on Instagram. Be sure to subscribe to our free email newsletter for our best stories.
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