injured diaphragm

[anotherbpimom]

It is looking like my daughter's phrenic nerve was injured, which controls the diaphragm muscle. The phrenic nerve is apparantly next to the brachial plexus. So far we have been told she has a 'paralyzed diaphragm' on the same side as her injury. Anyone else been through this? We are going to see if a surgeon can try to repair this nerve. I've so far read that it can rarely be fixed and that it is quite dangerous when this happends to an infant. (like...'can cause death'...) One doctor I spoke with has never seen this before, but is concerned it will greatly hinder her normal growth in her respiratory/chest area. Do any of you know more about this? btw... She is now doing breathing treatments and taking other meds, which look like a VERY long term thing... (3, 1/2hour sessions/day!!) My god, this is all now a full time job for 2 people!

[m&mmom]

Matthew's phrenic nerve was also damaged at birth. He came out not breathing. He had to be intubated immediately because he was turning blue. They took the tube out after 24 hours and he hospitalized the first month of his life - 3 of which he was on oxygen for. At first they just thought his lungs were not fully developed until they did an xray when he was 3 days old. At that point were were told it could take 6-8 weeks to heal or it could never heal. Matthew was very fortunate and he recovered on his own.

We did take him to an acupuncturist when he was a baby and had great results.

Cindy

[claudia]

Juliana's phrenic nerve was injured as well. She had a partially paralyzed diaphragm.

When she was younger, every cold went to her chest. She did use some of the steroidal inhaled treatments as a baby and toddler. I don't like to do too much of that and thankfully, neither did her doctors. We used them only in the winter (that seemed to be a more difficult time for her---still is) and only when really necessary.

She runs and plays like every other kid. She did get winded faster when she was younger, but now, at 8, you can't tell the difference. Swimming really helps the arm and the lungs, so we try to keep her in the pool.

I think the harder thing with the lungs was surgery. Juliana had 3 surgeries in 3 years and they had to be really, really careful with her.

good luck,
claudia

[F-Litz]

Maia also has a partially paralyzed diaphragm and we didn't learn about it until she was a bit older but we had many symptoms that she wasn't breathing correcting which we thought were related to other things... for example, her arm would stop working when she wasn't breathing well and I thought for years that it was growth spurts - so she went untreated for her lungs. Once we got a clear diagnosis (I noticed that tiny spider veins were sticking out of her cheek) and immediately took her to a pulmonologist, it all got figured out and she was on tons of steroids and other meds. It was helpful but very scary. I also found out later that she had some major allergy issues that were magnifying all of her symptoms so we took care of that and she's been really stable since.

It was really scary to think that all this went undiagnosed and she was having surgeries... for the last surgery her pulmonologist got involved with the anesthesiologist and they created a pre & post surgery plan and also how to handle things if they got bad in the OR and sure enough she needed steroids and other meds pumped in at that time, too.

I started Maia on breathing exercises and she also swims and is in two choirs. This year she started voice lessons, too. I believe that singing - and learning how to sing with your diaphragm - has really helped her come forward.

Feb 19th - wow that's tomorrow - is our one year anniversary of no steroids and absolutely no meds.

There are some rules I follow strictly. I keep her chest warm at all times with extra layers. She gets into a hot bath regularly and if it's really cold outside, she'll get into a hot bath as soon as she gets into the house. If it's really cold outside she covers her mouth with a scarf. She eats warm soup, tea, and warm food in the winter - we try to stay away from ice cream, etc.

She also takes homeopathic remedies on a regular basis that keep her immune system up. She washes her hands regularly and we clean under her nails every day and I find that to be most important - every single time she's had the hint of illness I check her nails and sure enough they are dirty and now that we keep underneath really clean she seems to be much healthier. (she has ong nails). She also takes this formular called Hyland's Bioplasma when she gets a hint of anything and also uses the Zicam Zinc Gel in her nose at the first sign. So I guess what I'm saying is that we really keep on top of things - I am vigilant.

Best of luck with all this - keep on asking questions,
francine

[Kath]

I'm 68 and have a partially paralyzed diaphragm. I had more problems with it when I was a child. I keep an inhaler in my pocketbook. I don't use it often but should I feel tight I know enough now to use it right away.

While this is part of a serious injury it did not mean that I could not lead a normal life. I played basketball as a teenager, swam, skated, ran and danced. It never held me back even being pregnant it did not cause a problem. Catching a cold is a big problem for me because I never get a simple cold. I usually end up with croup,bronchitis or pneumonia. The Pulmonologist said I did not sleep well because I don't fully oxygenated and suffer from lung fatigue. He said it was similar to post polio patients because later on in life it affects me as it did when I was younger.
I don't think doctors paid too much attention to obpi children years ago and did not look at this injury as one that affects the entire body. I was lucky because my family physician use to fluoroscope me when I was little and he know about my diaphragm and how it compromised my lungs. He always told me "no smoking" because my lungs would always be my weak spot.
At one of the UBPN camps Nancy and I were walking together and we both ran out of breath at the same time.
We had to stop to catch our breath.

Let's hope your baby heals completely and soon.

Kath robpi/adult

[Mica]

Beth,

Our 18-month-old daughter, Aria, also has C4 involvement. Like Matthew, she was unable to breathe upon birth and was intubated immediately. Aria spent 2 weeks in the NICU - predominantly due to her phrenic nerve involvement.

At 18 months, most of Aria's complications from phrenic nerve injury have resolved. (Aria will always have diaphragmatic weakness on her right side, but it is no longer a substantial weakness.) Having said that, we have to be very careful during anesthesia. Very careful. I sound like a broken record any time we meet with an anesthesiologist.

Hannah's complications will get better with time. Hang in there, Beth.

[anotherbpimom]

Wow! You guys are the best! As always when the responses roll in, I get teary eyed. Thanks for all the info and support. It is so very helpful.

There are a few more questions that I'm wondering now... Will this affect lung development? Or even the surrounding chest area develpment? Are there any tests we should get for her that are helpful? We do have a hepa filter in her room, but just found out she is moderately allergic to our cat. Any suggestions that help with the cat hair? -Besides keeping everything really clean. (we are keeping the cat)Has anyone found a humidifier to be helpful? We were just told it is good for head colds, but shouldn't be used for chest colds... This is the first I've heard of that. Ok. Thanks in advance.

[m&mmom]

We use a humidifier every night from when we turn the heat on to when we switch it over air conditioning.

[Mica]

We do, too! As an added bonus, Aria sleeps better with the white noise it makes!!!

[Amy Clark]

With all of Lexi's surgeries it took a very long time for her oxygen level to be high enough for them to discharge her. She also has suffered with a number of bouts of pneumonia. I have always suspected C-4 involvement, but she has never had tests necessary to prove it. One X-ray was taken, and they said her diaphragm was fine, but I don't see how an X-ray could prove this. Could it?