New to the site; seeking advice . . .

[agrasso11]

Hello there,

My sister had her beautiful baby boy Saturday morning at 12:49 a.m. Shoulder dystocia and the rest is history. Initially, thought he just had rapid breathing from the trauma. Later on Saturday they told her that his right arm was not moving. They noticed his right eye wouldn't open, and said that was normal for a newborn. He did better off the oxygen, for a while. And his eye did open. But yesterday they did the ultrasound of his diaphragm and noted problems there.

They have told my sister they think it's just a "stretch" and not a "tear" but have never explained why they think that. Now he has been diagnosed with Horner's and the diaphragm issue.

Since Saturday, I have been researching nonstop and everything that I have read has suggested that Horner's and diaphragm issues are signs of avulsion and must be treated promptly. I haven't wanted to scare my sister and tell her "what I think" from my "internet research" but I am starting to get concerned that they keep suggesting it's a minor injury and will probably heal on its own over time. Today, we told the nurse that the eye doctor had diagnosed him with Horner's, and she had never heard of it. My mother resolved to give her a print-out from Children's Hospital in Boston that says that more severe cases show Horner's and diaphragm problems. The nurse practically shrugged it off as internet research.

I guess I'm not sure where to turn next! They do have a call into the neurologist at John's Hopkins, and hope he will call back tomorrow. I pray that he hears the symptoms and sees the issue as more severe. I don't want to step on my sister's toes, but I am so frightened they will send him home.

Amy I being overly-concerned? Are there cases when HOrner's and diaphragm problems are associated with more mild stretches and not avulsions? If not, do I need to be a stronger advocate and yell and scream? I love this little man and want what is best for him!

[jmar]

i would go kicking, screaming, demanding, and do not take no for an answer to getting the little guy to a BRACHIAL PLEXUS SPECIALIST IMMEDIATELY!!! not a neurologist, the longer you wait, the worse it may become. it needs to be looked at and evaluated ASAP. there is a list of specialists under the resources tab on this site. those are not the only ones, but it would be a good start.

[agrasso11]

Oh my God. Thank you. I am printing this out and going to the hospital right now. I hope that she gets somewhere. My beautiful nephew.

[Tuckersmommy]

Hi there,
So sorry to hear about another innocent victim in this I've learned that the hospital and everyone IN IT are going to go above and beyond to cover their @ss's ...their going to brush it off,attempt to make it sound like its not to big of a concern but don't believe them.Do your research,talk to a BPI doctor and their staff,Have Faith!!!! Be positive always no matter how hard that may be,I was told when I delivered my son it was no big deal,he'll make a full recovery...they were just stretched nerves.Well,it was wasn't.It was 2 severed nerves and a avulsion.We are heading in for surgery #2 on Aug 14th But I'm thankful he's alive and healthy and although his Erb's is a little setback I'm amazed by how much improvement he has made in 3 years and the skills his BPI doctor has.Just stay focused & keep your head up.Every day things change

[jmar]

hope your sister is ok.

[katep]

I don't think it is necessarily the conspiracy that some others might think. That said, they probably say it is "probably just a stretch" because, in their experience, that is the most likely possibility. I would venture to even say that they "probably" have never even seen or followed a severe BPI so they wouldn't even know, would they? The fact that they've never seen a severe BPI doesn't mean anything to your nephew, does it? It does sound to me like a more severe BPI because of the diaphragm and Horners. Connecting with Johns Hopkins is an excellent first step. They have very knowledgeable people there when it comes to BPI, especially in neurosurgery, so I wouldn't freak out too much as long as that call goes through. The neurologist at Johns Hopkins is a perfectly good place to start, not all neurologists know about BPI but Johns Hopkins has a very knowledgeable team for BPI.

And please rest assured, there is no particular reason why sending him home would be bad or dangerous at this point. The followup is probably going to be outpatient in any respect, and even if it is a very severe BPI and requires surgery to help him, they will still wait to operate unless it is life threatening to not get surgery immediately. I'm not sure exactly what the rules are, but when our child was born and we were looking at the potential for early surgery, they wanted him to be at least 10 weeks old and 10 pounds for the anesthesia.

Hugs to you and hang in there. It's horrible and it's scare but it sounds like you are on track for an early consultation with a great team. That's pretty much all you can do other than enjoy your nephew. Try not to let the worry about this side of things get in the way of enjoying this new miracle in all your lives!

Kate

[agrasso11]

Thank you all. As you can probably tell, I am just scrambling and trying to do whatever is best and also allow my sister to be the mom. As soon as I got there, the NICU doc was talking to her, explaining the difference between an avulsion and a stretch (and the likelihood of surgery with each), and they had already contacted the one specialist in MD listed on this website (my mother and I had already called his office, too). She will have the appointment for the baby MRI before she leaves NICU and she will have arrangements for the therapist made, throught he Johns HOpkins clinic. I am not focused on whether it's a conspiracy or ignorance right now, just on him landing in the right hands. Bless you all, and bless this site.

[RaisingCropsandBabys]

((big hugs)). When kids have Horner's and Diaphragm issues it can point to a more serious brachial plexus injury. I would look up a Brachial Plexus Center in your area and have your sister call them. Many will do self-referrals if the hospitals are being pokey.

Be there for your sis. Ask her how she is feeling and don't tell her "it'll be okay". That can feel really demeaning. She's going to go through the grieving process and so read up on the stages so you can know where to meet her, emotionally. I think the biggest, most comforting thing someone told me when my son was first born and it was so crazy was, "Wow. That really sucks."
Make sure she has someone she can talk to (or be that person she doesn't have to be "strong" for) while she processes the traumatic birth and hospital stay, the unknowns, the appts. This injury involves many rollercoaster moments and she might feel a bit of every emotion under the sun. Then she may feel like she's "over" feeling sad and it may sweep her up again. It's strange how things hit like waves. If she hears too many "it'll be okay. it's just an arm, etc" she may start to close up and start bottling it in. Be her sounding board when she needs one or just needs to talk. It can help her more than she realizes. It's a strange, new world she was thrust into and it can feel very scary because it involves someone she loves more than life.

Your sister is going to need your and the family's support as she becomes her son's advocate and starts learning about the day-to-day care involved with a BP baby.

[jmar]

i am so happy you got in with a good dr that has TRAINING in bpi. a regular neurosurgeon usually does not have training in the treatment of brachial plexus injuries and that can be disasterous. i know that from my personal experience.

[katep]

jmar is right, generally neurologists are not specialists either, and that can be a disaster. The difference between a neurologist on a BPI team and a general neurologist is about as huge as the difference between a regular orthopedic surgeon and a BPI surgeon. We had our "disaster" with the latter. BPI is (thankfully) rare enough that most generalists never even come across a serious injury.

Kate