Wednesday, February 11, 2009

Choosing a Doctor

This is a question for all of you cleft affected families: How did you choose your child's surgeon? I can't help to keep wondering if I'll make the right decision for Riley. I will meet with the the team from Children's Hospital (Birmingham) at a multidisplinary meeting, but should I meet other doctors too to pick the best one? The only other team that is remotely close to where I live (3hr+ drive one way) is the team in Atlanta that some of you have used. If Riley does in fact have a complete bilateral cleft with palate (as we think she does) I feel very strongly that I want to her have a NAM. If the Children's group doesn't do them, I definately won't use them. But I can't really afford to go any where else other than Atlanta. There is no way that I could fly to New York or Boston weekly for months on end for NAM adjustments. Anyone with any insight to this? Is there a possibility that I could use a surgeon in another state, but use a orthodontist closer by to manage the NAM? I just feel like I'm running out of time and need to get a plan in place...

6 comments:

John, Shannon, Broderick, Camden, and Adalynn said...

It never crossed my mind to "look around" until after Adalynn's surgeries- then I started questioning my decision....would her nose be so flat, would they have used the NAM, would nasal splints have helped. I think as moms we are going to question our decision regardless. You can chose the team you have, love them, and then see someone else whose surgery turned out differently or read about how someone's surgeon did things different and question everything you once thought you were doing right.

I was grateful that Adalynn didn't have to use the NAM. I did NOT want to make weekly trips to Atlanta, and we were only 1 1/2 hours away. I can't imagine how tiresome and stressful 3 hour weekly trips would be. I know several people who flew to different places in hopes to "get the best" but if that means losing your sanity, causing yourself unneeded financial hardships, and/or stress on your family and other kids-then I am not sure it is worth it.

sorry for rambling- I hope I made sense.....just do what is best for you and your family. If staying close to home works (and they have a decent team) then do that. If you think driving to Atlanta will work-then by all means do it (we loved them--but I still questioned our decision, and I think many moms do regardless of who they chose). Good luck!!!

Allison said...

Hi Nola,

We knew from the beginning that we would take Abby to Seattle Children's and didn't really consider any other option, for us there wasn't one. We lucked out and were assigned the chief of plastics, Dr. Richard Hopper, as Abby's surgeon and she has had wonderful results.

I understand what it feels like to be "running out of time, needing to get a plan in place . . ." I was the same way. It's difficult to just sit and wait while you are wondering how this is all going to work out once Riley is born. It does seem like different doctors do things differently, but you also have to consider that each child and their cleft is not the same as the next. I DO think it's a good idea to research your options, and meet with the potential teams. You may be able to make your decision before Riley is born, or may come to that decision after you meet her. Each doctor won't know the exact plan until the extent of her cleft is known. I agree with Shannon 100% to do what is best for Riley and your family. For now, as hard as it may be, try to take a deep breath and know that you will be able to do this. It is hard. We've done it, and a lot of us, if not all of us, would do it again knowing what we know now. Our babies are amazing.

The Dawkins said...

My Avie only had a cleft pallett, which we did not find out about until she was born. We live in S GA (right on the Fl line). We had the option of Gainesville, Atlanta or Jacksonville. Jax was out (insurance). My thoughts on Shands were they were teaching hospital and interns would come and go and we were getting ready to start a long journey. That all being said we went to CHOA in Atlanta. It was the right choice for us.

You and your Riley will be in all of our hearts and prayers. Believe me when I say (all all will agree) that the support and info you get from the other cleft Moms is AMAZING.

It was hard to find peace those first few weeks until I could get some first hand answers from these gals!!

Krissy said...

I actually made myself feel really guilty for not consulting with other doctors. We went to St. Louis, which is about 2.5 hours away and there were actually three hospitals with cleft teams there. We ended up going with the one my ob/gyn sent us to and in the back of my mind, I think I'll always wonder "what if" I had met with all three teams? I am pleased with Drew's results, but I think you will always see someone else who you think had "better" results and wonder if you made the right decision. For peace of mind, I would suggest meeting with both teams and going from there. You never know, you may have an instant connection with one and not the other!

Terri Cote said...

We live in Georgia and went to Boston for Jaron's surgery. It was hard but so worth it. I would do it all over again. I will be more than happy to share with you all the details of how we got there and had our hotels and plane tickets paid for by organizations. It can be done. You can do that Latham or the NAM one place and have surgery another. You are your child's advocate. You make the best decision for her. Some may not like it but you do what you have to do. Please feel free to email me for any questions you have or if you just want to talk. We also tried the NAM in ATL (bad experience) then switched to NYU for 17 weeks of adjustments before meeting Dr. Mulliken and going to Boston for Jaron's surgeries. Write me for more details: tcote22@bellsouth.net

The Ski's said...

I feel like I am so behind on your wonderful blog...so please forgive the late post.

When Reid was born, we knew nothing of his cleft, so we took our doctor's advice and took Reid to a large Cleveland hospital. We never even thought to look around. I think we were just so glad to be going to a hospital that had a good reputation for a good plastic surgery unit, that we didn't really ask any questions. Well, we were less than happy with their plastics team, and it took a botched repair to lead us to somewhere else. We didn't have to look too far. Just down the road from where our first care was given to Reid was a CHILDREN'S hospital. For us it was a night and day difference bewteen the 2. Just even from all the anesthiologists being pediatric ones...not just a general one. To us, we NEVER even thought about this....but we seriously felt a weight taken from us when we transferred our care. I think you will have a general feeling of yes or no when you visit your team.

After seeing how up and "high tech" our current place of care is to where we started...I truly thank God daily that Reid is receiving the care that he is. Also, Reid wore the NAM for 16 weeks and also had nasal stents after surgery for 3 months. As much of a pain as it was...our plastic surgeon studied under the developer of the NAM in NYC, and so we knew we needed to follow his guidelines. And I will tell you, there were very hard days. Very hard. But, I can not even imagine where we would be if we would have continued our care with a place we felt uncomfortable in. Trust your gut....talk out everything you can...ask as many questions as possible....view the floor where Riley will be after surgery...meet the nurses....truly. You will know. We will pray for clear answers and peace of mind for you. You are doing awesome....hang in there...