Baker's Story:
At 18 weeks, during a scheduled sonogram, it was discovered that our bundle of joy would start his life with a few complications. We were informed that he might have a possible cleft lip and we were referred to a specialist for further testing. During the advanced testing it was confirmed Baker did have a left cleft lip but it appeared the hard palate was intact and not an issue. Unfortunately, with the limitations of even the most advanced medical equipment available, we would not know the full extent of the cleft until he was born. We were sad, worried, and confused as to why us?! We performed every possible fetal genetic test available and all of the tests came back negative for any chromosomal defects. The doctors stated that sometimes these things “just happen” and there is not a reason. Over time, and lots of internal discussion, we gathered our thoughts and realized this special boy picked us because he would be welcomed with open arms and had a huge family waiting for him. We were blessed to have him!
The rest of the pregnancy was pretty typical with the usual aches, pains, and nausea. At 33 weeks, during a standard scheduled OB appointment, it was determined Baker was breached (feet first) and that the amniotic fluid surrounding Baker was a 7, which is very low. Typically, this should have been a 14 or higher. A follow up appointment was scheduled for two days later and at this appointment the fluid levels were even lower at a 3. The doctor then admitted Cindy to the hospital that day for bedrest and to try to increase her fluid levels. After two weeks in the hospital on complete bedrest (except for short walks) it was determined it was best to schedule a C-section.
Baker was born May 30, 2017 at 9:27PM at 36 weeks!!!
After delivery it was discovered Baker also had a hairline opening in his hard palate. While we knew about the lip, we had no clue about the palate, and the worry and confusion from before rushed back. This hairline opening in the hard palate could cause several other health issues. Our first challenge would start with feeding.
Successful suckling relies on the creation of a vacuum, an impossible accomplishment for a baby with a cleft. Have you ever tried to use a drinking straw that did not work? Only to discover that it had a hole in its side? That is very similar to what happens when a baby with a cleft tries to suckle. He is always pulling in air through the cleft while he is suckling making it impossible for him to create the vacuum suction needed to hold the nipple in his mouth and drink and eat successfully.
Our first day we met with a specialized lactation nurse. Due to the cleft in the palate he is unable to nurse directly. She worked with us and explained the different types of specialty bottles and nipples that we were going to try. The first specialty bottle Baker tried he was feeding like any other baby . We were so grateful because if he was unable to feed with a specialty bottle he would require a feeding tube and a possible extensive stay in NICU.
The two weeks after his birth were busy as we met with the Cranial Facial Team at Children’s Healthcare of Atlanta (CHOA). Baker’s first appointment was with the entire team for a complete evaluation and a plan for the future. We met with a feeding team, pediatric surgeon, orthodontist, dentist, and dietitian.
Baker's first surgery, to repair his lip, was on October 13, 2017 at CHOA. Dr. Soldanska, our surgeon, did an amazing job with the repair and Baker was back to his usual self in just a couple of days. After months of healing, growing, and being a typical 9-month old, he had his palate repaired on February 9, 2018. This surgery was much more invasive with a longer recovery period, but true to form, Baker has excelled and continues to surprise us every day.
We know that Baker will have more surgeries in the future but with the amazing doctors and nurses at CHOA, as well as a strong support system at home, we know he will continue to excel and surprise us every day. We also want to thank Shannon for her amazing pictures and documenting our little boy's experiences and we will cherish his photos forever.
For more information about cleft lip and palate, please visit: CHOA craniofacial-disorders