Choosing a “team” for you child and family is an important first step in planning your care from this point forward.  Our experience was a frustrating one.  I am  the type of person that needs to have a plan.  I need to know what steps I am taking before I take them and I have everything written down.  You guessed it, I also have a pro/con list for most all things I am tackling!

I searched websites for information and centers near me.  I systematically went down the line and called ALL of them.  I even set up a video conference with  Dr. Court Cutting from NYU who  spoke to me at length about his approach to surgery and the care leading up to the surgery.  He even sent me links to an actual surgery that I could watch so that I could understand what he was talking about with regards to his “technique.”

So many centers I called and the initial response received was that we would simply have to wait until our child was born  before making an appointment.  We were told that it was of no use to come in now because nothing could be done at this point.  We felt lost, disappointed and as if no one really even cared that I was calling them about the care of our unborn child.

At this point I had called all of the centers in our area and just did not have a warm and fuzzy feeling about any one of them.  Thankfully, I received a phone call from a nurse over at the hospital where I had registered for our labor and delivery and she wanted to know if she could pass my name and number along to another mom who had recently given birth to twin boys both born with bilateral cleft lip and palate.  Within a few hours this angel of a human being contacted me in between feedings of her twin newborns and spoke to me at length over the next several weeks about her experience and to just lend support wherever needed.  She told me that she had chosen St. John’s Hospital because they felt right  the very first time she spoke to them and that she too had contacted Dr. Court Cutting and had even planned on taking her twins there for their surgeries and care but then changed her mind.

St. John’s Hospital  was not on my list of centers to call so I had not known they even had a Cleft Palate Team.  I  contacted Dr. Janet Salomonson and spoke with both her and her nurse Ann Masson.  They congratulated us on our exciting news and asked us when we could come in to meet with them and bring our ultrasound photos.  We were floored and relieved at this response.  We ended up making arrangements to see them at the week’s end and we’re so thankful that we were led there to them.

Our meeting was not rushed.  I had a notebook with questions I wanted answers to that day.  I was armed with my ultrasound photos and had even had the center email them to St. John’s so that they could review them prior to our meeting.   They patiently answered my questions, showed us before and after photos of their patients and explained their “team” approach.

By now you have heard about nasal stents, the NAM (nasoalveolar molding) device, duoderm taping and arm splints for your baby.  All of which sound foreign, frightening, and a lot of work.  Initially, everything my husband and I had read up until this point had us convinced that the best approach to getting the results we wanted for our child would be the NAM device.   It looks intimidating and we wanted all of the information regarding the device.  We already knew that there would be weekly appointments to have device readjusted and that it would be expensive.  Now I know that for us we did not much care about the expense or the time factor but still we knew it would not be easy and as new parents that would be exhausted we worried about how we would be getting all of this done.

I spoke with Dr. Salomonson and I wanted to know specifically why their center did not use the NAM and the reasons behind it.  She explained to me that she knew Dr. Court Cutting very well and had worked with him and  been at conferences with him.  She  continued to explain that they did in fact use the NAM device but that by accident really she had discovered that the NAM device was not necessary.   She had been treating an infant and  there were delays in getting the NAM device fitted to the infant and she did not want for him to simply be waiting with nothing happening so they had some duoderm tape and decided to cut it and use it tape across the cleft lip from one cheek to another creating that tension and helping to pull the facial features together.   They also put nasal stents in and asked the family to come back for an appointment once their NAM device was ready.  At their very next visit Dr. Salomonson told me that when she examined the infant she was surprised to see that the interior structure of the child’s mouth as well as their facial features had in fact moved closer together and seemed to be doing what the NAM device was designed to do.  She spoke with the parents and they agreed to continue with this therapy versus the NAM and to see if there was continued progress.

Well, there was progress and Dr. Salomonson discovered that it was much easier for parents to manipulate the taping and to feed at home without the contraption on their face.  The tape could remain intact while feeding creating that constant tension and the tape could be adjusted and manipulated to help with the end result, which is of course having a symmetrical face.  This route is by far less invasive for the infant, less costly for the parents and less visits to the doctor all while still having the same effect as the NAM.

Not only did this team  prove to me that they cared for our baby even before he was born but they really helped us to navigate the wealth of information and the reasons behind their philosophy and treatment approach.  We felt comfortable with  Dr. Salomonson and Ann and we felt like they really cared about not only our child’s care but ours as well. They were reassuring and let us know to contact them for anything at all and that they wanted to monitor my future ultrasounds.   We definitely felt that warm and fuzzy feeling and in my heart I knew that they were going to be the ones that we considered part of our village.

When choosing a team you need to know that they are on your side and that they are really working with you to give your child the absolute best care available.  Take a notebook filled with your questions and ask them.  If you are being rushed out of the room or feel as if you are being half listened to you are not in the right place.  You are YOUR child’s advocate and only YOU can get the care you demand.

I encourage you to contact several places and get a feel for each team and their approach prior to making your decision.  Speak to other families and ask if you can do so from that center.   Ask other parents why they chose the center they did and make sure you are comfortable with your decision because you will be there more than you are at home that first year.

R.I.P. Dr. Janet  Salomonson

You are sorely missed by many and continue to shine through in all of the smiles you helped to create.

tdowell22

I live in SoCal with my husband and two kids. Love reading, writing, being a foodie and coffee aficionado. I support other moms of cleft affected children. Our family is continuing along on this journey and we seek to help other families navigate terrain we've already covered. All Smiles is what we want for all cleft kiddos!