United Brachial Plexus Network

Has anyone, either personally or had their child, have phrenic nerve palsy that accompanied the BPI? My son has a RBPI and also suffered phenic nerve damage as well. He was on oxygen for the first year. I have had a VERY difficult time trying to find information on this. As if the BPI wasn't enough, the accompanying phrenic nerve damage is even more rare: so, there is little on it.

I was wondering about the following:
1. Information concerning this, along with occurance rate
2. Long-term effects of this (he is 3 now with no movement of the right diaphragm).

Any input will help! Thanks!

Kayla's phrenic nerve was severed during the primary surgery, she was 8 mo. then, she is now 8 yrs. Her right lung doesn't work at all either nor will it ever. They did try to repair it using a nerve from the rib but it had already been several years, so that did not take. She was also on oxygen for a long time and then used a iron lung machine to sleep in. We just recently got rid of that. The first 7 years are the hardest with infections. She still gets pneumonia all the time. Do you see a pulmonolgist? I know they did talk about putting a diaphramtic pacer into Kayla to stimulate the phrenic nerve but since hers was cut it would not work. Do you know if your childs is actually in two pieces? Please feel free to ask any more questions. Some good news is Kayla just ran the mile run at school. She did not have to because of the lung issue but she did and came in 26th out of three second grade classes. (It did take a toll on her for the rest of the day and the next but she will never let it stop her)!!!
Angie

Hello Guest
my son Gavin (12 years robpi) had some paralysis of the phrenic nerve when he was born, his was not severe enough to affect his breathing, so did not require any oxygen, however he did have significant feeding difficulties during his first year and was unable to keep liquids down unless they had been thickened with a prescription additive.
I have known other families with children who had phrenic nerve damage to consult with a pulmonary specialist -I am sure someone will post and offer further information for you - sorry I was unable to help further.
My son has not suffered any lasting effects from this phrenic nerve damage that we are aware of.
Good luck
Karen

I am so sad to hear about kids having this additional complication. It is awful.

Angie,
Is this a possible risk of primary? Is this something parents are told is a possibility? Has this ever happened to anyone else?

I wish your children the best and guest, I hope you can find the information you are looking for, sorry I cannot be of help.

Matthew had phrenic damage at birth also. He was on oxygen for 3 weeks had to get transfered to a children's hospital and finally discharged from the hospital at 4 weeks.
The neonatologist on staff at the hospital I delivered at gave us the diagnosis after a floroscopy x-ray was done. At first they thought he could't breathe on his own because his lungs were underdeveloped, then when he wasn't getting better they did that xray and it showed a text book case of phrenic nerve damage.

We were told that if Matthew was meant to be a marathon runner now he would not be.

Cindy

Funny, I just looked this up on the internet a few days ago. My son will be 3 soon with lbpi and his left hemi-diaphragm is paralyzed. One study I found stated the occurance of prhenic nerve damage in 5-9% of bpi kids. Here is the site:http://www.neonatology.org/syllabus/dp.html
also this one: http://brachialplexus.wustl.edu/presentation.html
We didn't know our son had this till last year through a routine chest x-ray for something else. It doesn't seem to affect him, except that he does tire easily. We also had a terrible time with eating.Finally found out he had reflux. Don't know if this from the diaphragm damage or not.
We are seeing a pulmonologist. She says she's never seen this in a child his age on only one side. Usually in an infant, and it resolved itself. Older children she's dealt with had both sides affected. None from BP. We are just keeping an eye on him for shortness of breath, wheezing, etc.
Hope this helps!

I forgot to add in my post that here in the Uk
I know of 3 children whose diapragms ahve beenso badly affected due to the phrenic nerve damage that they have had surgery (I believe it is known as a plication over here)
this has helped a lot with the breathing issues.
I don't know if it is available in the US

Kayla has had 3 plications, I believe Karen mentioned this. We live in Texas. (The first one was done in Dallas and the last two in Houston.) That is pulling down the diaphragm so that the lung holds more air. Unfortunally, it has not helped Kayla at all and the diaphragm just keeps rising.
As far as if this is a risk in the primary surgery. The doctor who we used for the first surgery was not as qualified as they said they were. We of course did not find this out until after the surgery a couple of years later.
Angie

Dear guest, you asked Angie about the risks... Well here goes - and please - I am not putting this here to scare anyone any more than they already are - just trying to help inform those of you who don't know. I'm sorry if this upset any of you...We were told of the risks of the primary surgery. They said the risks were; problems with reactions to the aneasthetic, possilble damage or severence of the phrenic nerve, cutting and collapsing the lung, cutting or dammaging important blood vessels to the brain - causing a stroke while under or worse, infection at the site, and of course, the scar factor. Despite all of these major risks, there are those of you (like us) who decided to go through with the surgery, to try to undo a wrong done, a medical mistake or a birthing emergency. It's because of all the wonderful people here that I was informed enough to ask the right questions and get answers from all the professionals involved. Although we didn't find out if there would be any emotional issues steming from having the surgery, we now know that there is...Before surgery, my baby was able to go to sleep in her crib with no fuss, now she wants to be held all the time and when I put her down to sleep - she screams in fear. We are slowly introducing her back to her crib for naps and bed time and it is working well as long as I'm there for her immediately after she wakes up. I think pretty soon she'll feel safe and confident enough to put herself to sleep in her bed.

Hi, My son has never had the flouroscopy but we suspect some damage occured - he had a terrible time nursing he would try a couple of sucks and as soon as the milk started coming he would get so frustrated and start screaming turn red in the face and then "cash out" he would go to sleep _ the doctor said that babies will do that sometimes when they can't cope with extreme frustration. now at 12 years the only noticable thing is when he gets overtired and sick it always seems to go straight to his chest and he gets a bad cold and cough, and high oxygen demand like distance running cause problems for him - he can hike all day 18 miles in the Canadian rockies no problem but prolongeg running is not easy for him. We met another boy his age who had more severe damage with the phrenic nerve and they tethered the diapragm down surgically and did a nerve graft to the diaphragm from the ribs. He swims and plays soccer now at 10 years. I wonder if it is more common and just not diagnosed in less severe cases like my son.