United Brachial Plexus Network, Inc.

When Matthew's 3D CT scan came back, along with the expected "train wreck" of the scapula/humerus etc, it was noted that he showed "pleural thickening" on the right side. It also appears that his right diaphragm is elevated, and that the ribs on the right side are spaced way too close together compared to the left side.
Matthew was in the NICU after birth for 10 days, with severe respiratory distress, I was told from mecconium aspiration. Now I am suspicious that this could have been paralysis to the diaphragm from the OBPI. He has not shown any breathing difficulties since the birth issue. (he is now age 4)However, a family member who is a physical therapist and teaches upper extremity anatomy is concerned about the positioning of the ribs, and that the lung may not be able to expand to it's full capacity as he grows.
Has anyone experienced any of these issues? This has thrown me for a loop, since I have been concentrating so hard and educating myself intensely on the shoulder deficits, and i didn't see these issues coming.
I am grateful for any information. Thank you!
Cathy Y.

Cathy,

Wow, you must be overwhelmed with the new information. Nothing like being given additional and unexpected negative information. I am sorry that I cannot offer any assistance. I am hoping others can.

The one thing that did cross my mind however, is probably WAY off but I know some children are born with an extra rib and that can push upward and compress the brachial plexus thus resembling a traumatic birth brachial plexus injury but not truly being the same. Did you child have shoulder dystocia? Was traction applied to your baby's head? Any way the ribs appear crowded or too close because there is an extra one on the right side? I would guess the rib cage issue is may not apply at all but thought I would throw the idea out.

Best wishes to you. Keep us posted.

Thanks for the thought! Actually, on the 3d ct scan you can clearly see the rib cage and there are the same amount of ribs on both sides. The ribs on the right side however seem really compressed.
And yes, there was shoulder dystocia, noted in the medical records, and a severe amount of traction to the point where my husband almost threw up watching it. He said it looked like the doctor was going to pull his head right off. The doctore even expressed in panic "why won't this come out?"

Does anyone else have any ideas?
Cathy Y.

I am not sure about the ribs being to close together. My daughters phrenic nerve was cut during surgery on her arm which resulted in a paralyzed diaphragm. She has had 3 surgeries on the lung so her ribs are deformed on that side. Her lung does not work at all now so we don't have the issue of the ribs causing problems with breathing. I would ask about having a floroscopy done that way they can see how the lung is working. My daughters Pulmonologist said that one of her main issues with the ribs being deformed will be scoliosis. We already know she has this problem. She is 8 yrs old and at a 16 degree curve now so we will probably have surgery for that later on. Please feel free to ask any more questions and I will try to answer them if I can.

Angie

Angie,
Thank you for your reply. I am so sorry to hear that your daughter was injured during surgery. How devastating this must have been for you. Was this recent?
I will keep the scoliosis issue in mind when I discuss this with Matthew's doctor. I will also inquire about the floroscopy. Thank you again for your insights.
Cathy Y.

Cathy,
C4 controls the diaphragm. Matthew had C4 involvement also. He had to be on oxygen for 3 weeks after birth. He was hospitalized for the first month of his life. He had feeding issues because he couldn't suck swallow, breathe so I wasn't able to nurse him but I did pump for the entire first year. At first they told us that his lungs were underdeveloped (he was 38 weeks 10lbs 6oz so that was the first clue that I was gestational diabetic and not diagnosed). Then a couple of days later he was not getting any better so they did a floroscopy xray and that's when they saw the text book case of phrenic nerve damage. By the time he was about 8-9 weeks his breathing finally evened out.

Cindy

Angie:
Just as you go to a specialist for bpi, make sure you go to a really good specialist for scoliosis. Not just any orthopedist, either. But find someone who is really up on the newest ways of dealing with scoliosis. There is a national scoliosis foundation, so you may want to see if there is a doctor near you. Our 8 year old daughter also has scoliosis. She is not bpi, and she has a 16 degree curve at the top and 20 degree at the bottom. We are at the watch, wait and see place right now. She has not hit puberty, though she is tall, but we go to him every six months as there is ALOT of scoliosis in my family.

Also, my mom's sig. other has a child who had a 40 degree curve and they did the brace and the surgery.
She is now 39 years old and in constant pain. It seems that is the side effect of the bracing and the surgery... He was head of the NY State Scoliosis Foundation and was instrumental in having scoliosis screening instituted in all NYS schools. He has told me that there are new therapies and modalities, and we should make our decisions carefully.

So, all of that said. You have a special situation and it requires special attention.

Most bpi kids are at higher risk for scoliosis because of muscle imbalances and compensation. This doc is already checking Juliana (she is 4).

Good luck,
claudia

Cathy- Kayla's phrenic nerve was cut during surgery when she was 8 months old, she is now 8 yrs old. She is doing much better but she will never be able to do some things. She is not aloud to play sports and as of right now they say she will never be able to have children but that is along way away before we worry about that!!

Claudia-- Thanks for the input about the Orthopedic doctor. She is seeing a speacilist here in Austin who is suppose to be good. I am still not sure and I know I will take her for second opinion. We did talk about the brace some already but with her ribs being deformed and not really developed (and the right lung not working), they don't think that will be an opition for her. I am trying to be optimistic and hope that it won't get worse but she is only 8 and has not hit the growth spurt yet. So we will wait and see, like everything else.

Angie

I find this post of great interest, Ashley is going on 8 and she too has a curve and a less than perfect lung......very interesting! Also when she was a baby, 9 weeks old to be exact she had to have surgery to repair a valve in her stomach....got me a wondering now.

All the best to your little ones.

Lenni

Dear m&mmom - my son had the same trouble nursing and I too expressed milk for him I think he was six months old before he could breastfeed and I could switch him over. They told me the nerve was fine to the diaphragm but when he does distance type running I can see that it is not. Twelve years later and the pieces to the puzzle are still just coming together.