“This narrative begins in 1930, with the birth of a tiny girl whose appearance was completely unexpected and shocking. She didn’t resemble her older sister, nor did she reach any other member of her immediate or extended family. She was born with a cleft lip and partial palate on one side. The surgeries to restore her lip and palate were performed without her parents because there was no other alternative during the Great Depression.
This lovely young lady became a nurse and a stay-at-home mom. She quit her job as a nurse to pursue the “greatest job globally.” She was an amazing mother who grew up to be a much-loved grandmother. She used to be my granny.
These medical words, such as cleft lip or cleft palate, are not unfamiliar to me. Because of her cleft palate, my grandma lost hearing in her left ear from all the ear infections she had as a child and had to use a hearing aid. She had a barely visible scar on the left side of her lip that continued up inside her nose, which was unusual at the time for plastic surgeons.
According to Mayo Clinic, cleft lip and palate are birth abnormalities that can occur independently or as part of a genetic disorder. Some birth abnormalities are inherited, and some can be passed down through generations. According to my great-grandmother, my grandmother’s children could be born with a cleft lip and palate. Until my youngest kid was born, no one in our family had a cleft.
I recall the beginning of my voyage; I vividly remember one of those days. It was February in Michigan, and the night before, it had snowed. I took the day off to go to my annual doctor’s and dentist’s appointments. I had planned to see an OBGYN, a dentist, and get a physical from my primary care physician. That day, I just had one appointment with an OBGYN. When you’re not pregnant, these sessions usually go the same way every time: you leave a urine sample, answer some questions, talk to the doctor, and then you’re on your way. Not today—God has something else in mind!
I put the pee sample aside and awaited my appointment with the doctor. My doctor entered the room with a solemn expression on her face and informed me that I was expecting a child! My spouse and I had no intention of having another child. In reality, I was on birth control pills at the time. My oldest was just over a year old at the time, and we were settling into life as a three-person household. I inquired whether she was joking when my jaw dropped. ‘Unfortunately, this is not something I am even allowed to laugh about,’ she explained. That’s when the tears started to flow–shock tears.
‘How does this happen?’ was the next thing that sprang to me. I realized what I’d asked after I’d asked it, and we both chuckled. I then said I didn’t understand, that I was on birth control and had recently stopped using an anxiety medication due to adverse effects. Horrible headaches, constant exhaustion – painful exhaustion, nausea, and a rise in hunger were adverse effects. I’d previously been pregnant, so I should’ve known, but I didn’t.
That day, I left the visit with ultrasound photos of my 14-week-old baby. Yes, I was in the second trimester at the time! After notifying our stunned spouse and sharing the news with our parents and close friends, we were ecstatic.
We went in for the 20-week anatomy scan just a few weeks later. I informed the ultrasound tech about my family’s cleft history, just as I had done with my first pregnancy, and we proceeded. We discovered we were carrying another boy after seeing our son’s gorgeous face, arms, and legs. We left with some fantastic ultrasound images and proceeded into an exam room to go over everything with our doctor–this is standard procedure following a 20-week scan to discuss the ultrasound, answer any questions, and discuss the next steps.
My doctor entered with a solemn expression on his face, stating that the scan indicated that this adorable boy had a cleft lip and potentially palate. She wasn’t sure to what extent she was unsure, and their ultrasound equipment couldn’t tell her. She would send us to a local cleft team, or we could go to the University of Michigan, which has one of the best craniofacial departments in the state. We didn’t even exchange a glance before telling our doctor to send a referral to the University of Michigan, two hours away from our house.
We left this appointment in a state of disbelief once more! On my way back to work, I called my mother bawling in the car. I was relieved to learn that our baby was in pretty good health, but everything else was unknown to me. My husband and I tried to go over the ultrasound images to see if we could see anything, but we had no idea what to look for. We had no idea what to expect, but we knew we’d fall in love with this baby boy no matter what. Nothing was going to change that.
When you are referred to a specialist program team, you will be bombarded with a deluge of information. Ultrasounds with special machines, many appointments, pamphlets, leaflets, one-pager educational papers, websites, and a slew of questions to answer were all part of our experience. ‘Completely overwhelmed’ isn’t even close to describing our feelings.
I recall them taking particular measurements at one of his ultrasound examinations, and we were told that his brain and heart looked fine. Still, his neck fold measurements could indicate the presence of another genetic abnormality, such as Downs Syndrome. We had the option of doing more testing, but we chose not to, just as we had with our oldest kid. There are no outcomes that would have changed our feelings for this child. No test result was going to affect God’s plan for this baby.
The ultrasounds can tell you whether you have a unilateral or bilateral cleft. My grandmother’s condition is unilateral, which means only one side of the lip is afflicted. Or, as our son has, bilateral, which means both sides of his lip are damaged. Because the palate can be challenging to spot on ultrasound, we had to wait until he was born to find out if he had one–we were informed it might be entire or incomplete. Complete, in which case he would have no palate at all, or incomplete, in which case only a portion of the palate would be damaged.
Our baby was born via induction at a hospital in our hometown eight days after his due date. He was born with a complete cleft palate and a bi-lateral cleft lip. He lacks a palate and has holes from each nostril into his mouth. Run your tongue along the inside of your mouth’s roof. Right now, our son doesn’t have a ‘roof of his mouth.’ His upper jaw is in three pieces as well. According to our UofM cleft team, he wouldn’t need to go to the NICU if he could eat. Dr. Brown’s Special Feeder bottles, created for cleft babies, were given to us to go to the hospital with us to assist him in eating.
Our local hospital informed us that we could not use Dr. Brown’s bottles, which they had never used before, and that we should instead use the Haberman bottles they had on hand. Because the Haberman bottles were difficult to use and our son struggled to feed them, he was admitted to the NICU for five days. Those days were long and frustrating, made much more so by a rounding doctor who had no experience with cleft babies and insisted on increasing our baby’s milk intake to an unattainable level.
Because of two factors, our stay in the NICU was cut short, and we could return home sooner.
1) During our son’s final days in the NICU, his NICU nurse was a family member I’d known all my life. She asked whether she could look after him. She was an excellent source of information, encouragement, and support for our son. Make sure you pick a nurse willing to listen to you and understand your circumstance. You’re going to need that advocate. I’m crying as I write this because she means so much to me.
2) My hubby is a wonderful father and husband. He discussed the volume, feeding tube expectations, and finally securing consent to utilize our Dr. Brown Special Feeder bottles with the rounding physician. He was diplomatic, respectful, and forceful. Our youngster was allowed to go home the next day after that chat and the bottle change. One of the many reasons I adore this man is because of this.
Before the doctor appointments began, we were able to enjoy this precious new baby as a brand-new family of four. Since we brought him home, my older brother adores his younger brother and has called him “his baby” since we got him home. God is so good, and I am such a blessed mother!
We began weekly appointments with our cleft team at UofM, two hours away, when my son was two weeks old. We had an option to make at our first appointment. We could use tape, or a retainer-like device called a NAM (Nasoalveolar Mold) to pull the skin together before lip restoration. The NAM was chosen to help shift the jawbone’s centerpiece back. This gadget would require weekly visits to be designed and altered so that bone and tissue could be gradually moved into place before surgery. Nasal stents are also used as part of this procedure. They’re used to help shape the nose, and they made my son cry for hours after they were applied.
After ten weeks, I decided to quit using the NAM. It’s a difficult decision to make when you’re already trying your hardest to be the greatest advocate you can be while also wondering whether you’re failing your child. Our physician advised us that whether we did nothing, just taped, or used the NAM; the outcome would be the same, in his opinion. When we were matched with our surgeon, God blessed us once again. He’s been fixing cleft lips and palates for 26 years… He is a perfectionist who will go to any length to ensure our son’s success in the OR.
Our son’s lip repair was planned to take place on January 22, 2020, but he caught RSV during the holidays, and because RSV wreaks havoc on newborns’ lungs, the surgery had to be rescheduled to give his lungs time to recuperate. The event has been rescheduled for March 17th, St. Patrick’s Day! We decided to launch a T-shirt fundraiser to offset some of our expenses because of the medical costs, both doctor and hospital. The outpouring of support from relatives, coworkers, and friends who ordered green T-shirts with a unique message supporting our kid to wear on surgery day astounded and humbled us. We were all looking forward to this day since, after all, it’s meant to be luck.? Not if a worldwide pandemic strikes.
My husband received a call on March 13 informing him that his operation had been canceled due to COVID-19 and the hospital’s new restrictions. They didn’t know when procedures would be available again, so they’d phone and inform us. On March 13, I sobbed uncontrollably for a long time. But, because a mother’s work is never done, you get up and move on while waiting for weeks to pass. The surgery team called at the end of April. They were permitted to schedule urgent/emergent surgeries that, if not completed, would put our son’s care at risk. The surgery was set for May 5; however, due to COVID, only ONE parental guardian was allowed inside the hospital. There was no doubt in my mind that I would be the one to accompany our son through this ordeal.
There are no manuals for ‘How to Survive Surgery Alone with a Baby During a Pandemic,’ but there are best friends, family, and other cleft mommas who can assist you get through it. At the outset of my journey, I met a cleft mom whose son had just received palate surgery before the epidemic. She has always been a calming influence in my life and a source of knowledge. She sent me a care package and assured me that I would be okay before the procedure. My best buddy listened to all of my mother’s anxieties and silly stories, and he sent us Lucky Leo, the bear, to accompany us to the hospital.
I would have loved to ask my grandma or even my great grandmother so many things now more than ever, ones that I ended up asking my mother. We could talk about anything even if we didn’t have the answers. I had to efficiently pack everything I’d need for a possible two-day trip and get it all into an 8-month-stroller. Old’s The day of surgery was bittersweet. I had to say farewell to his wonderful big smile and hug and kiss my spouse while wearing masks outside of the hospital. I walked into a world that was radically different from the one I was familiar with.
I kept it together until I got down to the café after the nurse whisked him away to operation. I ugly cried into my sandwich as I sat alone with my mask under my chin. I was soon called to the recovery area after the surgery, which lasted about 3 hours. Before going in, I texted my best friend that I would puke or soil my pants because I was a bundle of emotions. We laughed along as she was reassuring. I needed to refocus and calm down, and she assisted me.
Nobody informs you about the aftereffects of surgery. Your infant does not smell like your baby; instead, they have a sterile, harsh odor. Your infant doesn’t appear like your newborn; they are vast and crimson. I was also alone, with no one to hold my hand or assist me in retrieving items from the diaper bag for myself or my son. I had to slowly slide to the end of the rocking rocker and scoot the stroller around to my side with my foot so I could get the formula out to try to feed my baby because there were so few nurses and personnel in post-op. Because the hospital does not supply formula or bottles, I was on my own.
My kid underwent lip adhesion surgery, which entails stitching together all of his lip tissues to draw his jaw back and together in preparation for the final lip surgery. In August, the final lip restoration will take place. Finally, three months following the lip surgery, the palate will be repaired. We stayed at the hospital for one night before returning home to recover. The days and nights following surgery are long, but you get to go home. It’s natural for your baby to revert to newborn sleep and eat routines.
It is typical for their nose to smell terrible while it recovers. It’s common for your infant to have to relearn how to feed. After surgery, be patient with yourself and your baby, especially if you’re coping with the stress of a healing baby as well as the focus of a pandemic. No one has gone through surgery with a newborn during a pandemic before us, and you’re probably the first person you know to do so. Just remember to be kind amidst everything else that is going on in the world.
My son’s struggle isn’t over, and the pandemic isn’t either. If your family has recently received a cleft diagnosis, realize that it’s natural to cry and be worried, but don’t allow this to take away from the joy of your pregnancy. Take photos of your precious cleft smile before surgery and love on that smile you already know, but know that the sweetness you’ll fall in love with again after lip surgery is incredible.
Your family was picked for this baby, and you were chosen to be their mother because you are strong, fearless, and a fighter. One in every 700 babies is born with a cleft palate. You are not alone; families face the surgical road ahead with trepidation! The path forward of us is still long, but we’ve crossed it, and we’ve done it Cleft Proud and Cleft Strong!”
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