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Sweet Pea’s Story
On a beautiful Colorado day in June of 2012, my heart was racing with anticipation and excitement. Our long awaited second child was about to make his entry into the world! When he was born, he made no sound because his cord was wrapped around his neck…twice. They removed it and within moments, he was screaming his head off. It was like music to my ears! Moments later, the doctor informed me that our son, our Sweet Pea, was born with a cleft palate. While we knew that this was a possibility as I was born with one as well, it was still a blow. I had walked this road, and I knew of the struggles that he would face.
He was admitted to the NICU for observation due to his difficult delivery, but ended up staying for 3 days because he needed oxygen. He went home with oxygen, and remained on it for 13 weeks. During that time, feeding became a major issue. Our son was born without any of his soft palate, and was missing some of his hard palate as well. When people hear that we had cleft palates, they often say, “wow, you look so great!” While I appreciate the compliment, I realize that there is a lack of knowledge about clefts and choose to take these occurrences as a gift…an opportunity to raise awareness about clefts. For Sweet Pea and I, we do not have complete clefts, meaning our lips were not impacted by our cleft (see the bottom left picture in the chart below). While cosmetics were not an issue, feeding, breathing, speaking and orthodontics are.
Because his cleft eliminated his entire soft palate, he was never able to latch to breastfeed. This was a huge blow to me and contributed to my post-partum depression. At only 6 weeks old, Sweet Pea was diagnosed with failure to thrive. We tried several methods of feeding him before we found the Haberman feeder. It is now called the Medela Special Needs Feeder and just one costs about $30. Obviously, the ability to feed our son was priceless, but it was very challenging. If it weren’t for this awesome bottle, our little man would have gotten a peg tube to feed him.
Many children have their cleft palates closed around 6 months of age…unless they have a craniofacial anomaly that impacts their airway. Our son also has Crouzon Syndrome, which makes his midface small, therefore making his airway small. Because of this, we had to wait until he was 12 months old before closing his palate. It was a long, difficult road, but well worth it!
A cleft palate repair typically takes about 3 hours…P’s took 5. It was the longest day of my life. When the craniofacial surgeon came out, he told us it was the most difficult repair he has ever done, but he believed it was successful. Two years later, I can attest to that claim. So far, P has had three surgeries, and the only surgery on the horizon is replacing his ear tubes. Today his biggest challenge is speech, but he has an amazing speech therapist and he is a resilient guy. We will continue to have him monitored by his Cleft/Craniofacial Team on a yearly basis. While we cannot predict his future, we do have a good idea of what to expect from my own experiences.
My hope is that this post will raise awareness about clefts and craniofacial differences, and that it will encourage parents who are on this road too. As someone who was born with Crouzon Syndrome, Craniosynostosis, Chiari Malformation, and a cleft palate, I can say that I am thriving today. My son has taught me a lot about myself, how I deal with our birth defects and how I view myself and him as we walk this path. He has taught me that I am his voice, his advocate and his cheerleader. Maybe he can teach others too?
Since it has been a few years…four in fact…I thought it would be appropriate to catch you up. Our Sweet Pea just turned 7, has had a total of 7 surgeries, and is thriving! Both of us received a new diagnosis this year of Stickler Syndrome. It is a diagnosis that is closely related to our other diagnoses, but did bring up new considerations that he has taken on with the same strength that he has handled everything else with. He has faced bullies, scary hospital stays, and setbacks with bravery, grace, and forgiveness. We enrolled him…and our entire family…in taekwondo, which has improved his balance and coordination, boosted his confidence, and been a huge blessing to our entire family.
For 2019, P is an ambassador for Children’s Hospital Colorado. You can read his story here.
Some days, I still struggle with guilt for “giving” my son his conditions. But most days, I remember that I am uniquely qualified to be his mother. I am his advocate, I am sometimes (but less frequently) his voice, I am his mother. We are not defined by our diagnoses, and we refuse to let them hold us back.
Here are some links for further research and support:
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Sara is a mama of four children, two of them being surprise identical twin girls. She is currently pursuing her Masters in Mental Health Counseling, and works as an addiction counselor. Most of her writing is centered around raising awareness about Crouzon Syndrome and cleft palates, advocating for your child, wellness, and raising multiples. Find her at https://www.facebook.com/scwellnessjourney/