Need peds recommendation for baby with birth defect

[Anonymous]

I am pregnant with a baby that has a birth defect. I am hoping that someone can suggest a pediatrician in DC that works well with children that have special needs. The baby will be in Children's hospital in DC for a couple of months and will need to have one or more surgerys. Any help you could provide would be great.

[Anonymous]

It is difficult to recommend a ped without knowing what the special need will be as I think that different doctors naturally have different strengths. But - i do think that if you have a high risk doctor right now or you are meeting some doctors at CNMC, then i would ask them. i would simply ask, "if you were in my situation, what pediatrician would you like to care for your children?". i would ask over and over, to almost any medical provider you find. While at CNMC, you will also meet multiple doctors. Will you need to have a pediatrician directly after birth or will the docs at CNMC following DC's care? If that is the case, I would ask that same question after DC's birth.
All my prayers

[Anonymous]

OP here. Thanks for the response. The doctors at CNMC have been monitoring me every two weeks. I meet with 5 different departments and I have brought it up to some of the docs but they haven't really pin pointed anyone specifically. They just said I could look up a pediatrician associated with CNMC which I can easily do but would also like feedback from other moms. To answer you question, yes the ped will need to be involved from the start. aAthough the baby will be cared for by the neonatologist (sp?) in the beginning, I don't want to bring the ped in cold turkey once the baby is released from the hospital as the baby will need ongoing care and have feeding and possible respiratory issues for quite some time.

[Anonymous]

My son has a rare genetic neurological condition and as a result we have frequent flier miles at Children's Hospital. His pediatrician is Bertha Koomson at Pediatric Village in NW DC, and she and the other doctors in that practice have been very supportive and great team players. When he needs to go to the hospital, they call ahead to the ER to let them know he's coming, and that helps us avoid a wait. They stay in touch when he's hospitalized, calling me in the ICU or his room, and calling the attending physician. They are associated with the hospital. They help me get the medical equipment and medicines he needs. They are warm, personal, and respectful.

Good luck to you. I think it is awesome that you are doing this research now. You sound very strong and loving, and I'm sure your journey, though challenging, will also be full of rewarding, enriching, and amazing experiences.

[Anonymous]

I also recommend looking at the Georgetown practice- they have many special needs patients because of the NICU at Georgetown and because of the available specialists. Many of the specialists overlap with Childrens as well.

Knowing what type of birth defects will help guide you best.

[Anonymous]

OP here -- Thanks everyone for the feedback. I truly appreciate it. I know what birth defects he is faced with right now but its rare so that is why I didn't throw it out there as most people don't know what it is and I have would have to explain everything and I am just not up to it. There is also a high likelihood that he could have other defect but we won't know them until birth.

I will definitely check out the pediatric practice that is affiliated with CNMC as that will make things so much easier as they do take care of a lot of the coordination work for you and make sure you get seen by the right people at childrens.

I will also try to find the Georgetown peds that are affiliated with CNMC since I live a mile from that hospital it would be very convenient.

[Anonymous]

OP, where do you live? I ask because as another special needs mom, your little one may be making frequent trips to the pediatrician for respiratory stuff, accidents, etc. You don't want to have a long trip. Of course, your little one could be bursting with health despite their birth defect/special need. Let's hope so. But at any rate, I think it's best to have a pediatrician close to your home.