Back in 2013 when I (Abby) was 20 weeks pregnant with our son Jaxson, we found out that he would be born with a Unilateral Left Cleft Lip and Complete Left Cleft Palate. This cleft was identical to the one my husband (Kristopher) was born with. From that point on we had to change doctors, hospitals, and make a plan for after Jaxson was born. After Jaxson was born he had breathing complications and this resulted in a 4 week stay in the NICU. Raven, was born in September of 2018. We had no idea that she had any medical complications until she was born and unable to breathe on her own. Immediately follow delivery she was rushed into the NICU. After being evaluated in the NICU it was determined that she had a recessed jaw, a small airway, and a bilateral soft cleft palate and would be later diagnosed with Pierre Robin Sequence. With no preexisting PRS within our family DNA testing along with several other tests we completed.
With Jaxson we knew well before he was born that we needed to seek a panel of specialty doctors to help with preparing for surgeries, after care, speech therapy, etc. Raven's experience has been nothing like that. We had no clue what type of condition Raven had, how to help her, or what direction to take. For the first two weeks of her life we had no diagnosis. After several test coming back negative for what the doctor thought it might be, a DNA test that came back and showed a "normal" result we were frustrated and felt defeated. Already having a panel of experts at my finger tips, I picked up the phone and called our craniofacial panel that sees our son Jaxson. After a short conversation the coordination nurse said "do you have a video of how she is breathing?" I said "Yes, I have several. One her just asleep and breathing and one where she is having a breathing episode and she is struggling to breathe." The coordination nurse said "Well it is panel day and we have a doctor here that I think can help you. I emailed her the videos and waited patiently for a phone call back. When my phone rang I held my breath hoping for an answer or direction. It was the doctor! He simple said " Hello, Mrs. Deala, your daughter needs to be in Sacramento by next week before she is one month old. She has what is called Pierre Robin Sequence and needs a jaw distraction surgery now" I felt so much relief, we had a plan and knew what the next steps. The unknow is such a terrifying space to be in. We moved forward with transporting to the hospital where her surgery would take place and set the plan in motion.
You know your child. It took me a long time to become comfortable with disagree with doctors, nurses, specialist. It is extremely important that you, your child(s), and team of specialist are on the same page. The team of specials are there to help you not tell you what you have to do. After Raven's jaw distraction she was still on an NG feeding tube. They said she "should" start to eat more from a bottle within the first few weeks post surgery but if she did not that we would have to look into placing a G-Tube ( feeding tube through her tummy). After that appointment I felt defeated and like I was doing something wrong! Kristopher and I had a long discussion about how we wanted to handle this situation. I looked at my husband and said "I know our daughter and she will eat from a bottle when she is ready and I am not going to jump the gun and place a tube before I have exhausted all options to get her to eat fully from a bottle" He simply looked at me and said "You know best babe." At our next appointment I looked at the specialist and said "We will not be putting a G-Tube in. We will be working on bottle feeding and getting her off the NG Tube." We work for what seemed like hours to come up with a plan that fit what I wanted for my daughter and what the specialist was telling us. We finally agreed on a time frame that worked for us. I had a certain amount of time that Raven needed to be fully eating from a bottle and not using the NG Tube before that would remove the NG Tube and take placing a G-Tube off the table. I knew in my GUT that Raven would be able to do it! By trusting my GUT and standing my ground, Raven was off the NG tube before her time frame was up and she never needed a G-Tube. I know it can be scary to go against what a specialist is saying is the "best choice" but you know your child and what is best for your family! Trust your gut it never leads you wrong! XXOO Abby!
Below is a timeline of Jaxson & Raven Deala’s observed symptoms, diagnosed conditions, and treatments and therapies.
Signs & Symptoms
Too little or too much abiotic fluid
Treatments & Therapies
Doctors & Specialists
On Dr. Workman
Dr. Workman has been working with Raven since she was born. She has been helping us look for answers for Raven's PRS!
On Pierre Robin Sequence
Raven has no other conditions, all genetic test have come back negative, and her DNA had a "normal" result. We still do not know why Raven has Pierre Robin Sequence.