Samantha Jane
-
Tanya in NY
- Posts: 935
- Joined: Mon May 03, 2004 10:51 am
- Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
- Location: NY State
- Contact:
Re: Samantha Jane
Hi, Melissa. Welcome to the UBPN boards. I'm sorry that you and your family have had to find us. My name is Tanya, and I have a 4 year old daughter named Amber who has a right arm injury birth injury from a delivery that did not go so smoothly.
It's completely normal for you to go through an array of emotions related to your daughter's injury. Guilt is a common emotion for most of the families here, although it is not a necessary one. Please work on letting any feelings of guilt go, as you are NOT responsible for your child's injury, and you cannot change the injury at this time. Harboring guilt will only take away from all the positive energies you can offer to your daughter. It's something that some people work through quickly, while some of us take months to years to work through, as many of us here can attest to.
It is very common for doctors/nurses to say things like "your baby will get better in a couple days/couple weeks" when you are in the hospital. This is exactly what I was told when I had my daughter. It is what I believed because it is what I was told by my colleagues (I'm a Labor and Delivery nurse). I was misinformed. I have seen recovery in hours to days, but I have also not seen this occur. Nobody knows what will happen until it happens. I'm sorry that you were misinformed, which you will learn seems to be the way it goes with BPI (Brachial Plexus Injuries) when you are talking with people who have a little or no knowledge about BPI/Erb's Palsy.
Doing range of motion (ROM) exercises is excellent. Good for you for learning them and doing them already!
I would recommend that you schedule an appointment with a BPI Specialist...someone with expertise in the area of BPI. You are in Wilkes Barre, PA, so you are very close to Dr. Scott Kozin at Shriner's Hospital in Philadelphia. We have used him and still do as many parents on this site do. Here's his contact information: 1-800-281-4050. There's a medical resource directory on this website that lists many terrific doctors as well that are located across the country that many parents will atest to...please check it out. My point is...if you had a problem with your heart, you'd see a cardiologist. If you had diabetes, you'd probably consult with an endocrinologist. If you had an issue with your kidneys/bladder then you'd consult with a nephrologist. So it only makes sense that since your daughter has a brachial plexus injury (Erb's Palsy), then she should see a specialist who has extensive knowledge in that area.
When my daughter was born, she initially only had finger, hand, and wrist movement while the rest of the arm was flaccid (not moving). She did not move any other part of her arm until she was just about 4 months of age, and then she just flinched her shoulder a tiny bit. It was so subtle, that my husband and I were doubting ourselves if we had actually seen it or not until it happened again. What a joyous day that was. She has been in OT and PT since she was an infant, and now just gets OT services. We've done aquatic therapy when she was younger (taking a break from it right now). She's taken up tap and ballet instead. She's had one surgery at age 25 months when her shoulder was subluxed (partially dislocated as shown on an MRI, which Dr. Kozin did that surgery and it was a wonderful outcome). She's had a few different splints/braces, and currently wears TheraTogs all day. She has some limitations, but usually most people don't mention noticing them to us. She is 4 years old now and she can climb on the playground equipment (although I'm nearby scared to death sometimes), rides a bike with training wheels, can do a somersault, has many friends, is a chatterbox, likes to dress up like a princess, knows she has Erb's Palsy and doesn't seem to be slowed down. Recently she's been working on trying to do a bridge (where your hands and feet are on the ground and your belly is pushed up in the air so you look like a bridge). She's been trying to do this since she started dance class in September. She couldn't even come close to getting her right arm up by her ear to do this, and just in the past month, she's figured out a way to place her hand there before starting the bridge, and now can do it without anyone supporting her for a few seconds! Children are resilient and strong willed. They compensate (even when we don't want them to), and they laugh and giggle and surprise us in so many ways. You'll learn a lot from your daughter.
And congratulations on Samantha Jane's birth!
Tanya in NY
Amber's Mom, ROBPI, 4 years old
Message was edited by: Tanya in NY
It's completely normal for you to go through an array of emotions related to your daughter's injury. Guilt is a common emotion for most of the families here, although it is not a necessary one. Please work on letting any feelings of guilt go, as you are NOT responsible for your child's injury, and you cannot change the injury at this time. Harboring guilt will only take away from all the positive energies you can offer to your daughter. It's something that some people work through quickly, while some of us take months to years to work through, as many of us here can attest to.
It is very common for doctors/nurses to say things like "your baby will get better in a couple days/couple weeks" when you are in the hospital. This is exactly what I was told when I had my daughter. It is what I believed because it is what I was told by my colleagues (I'm a Labor and Delivery nurse). I was misinformed. I have seen recovery in hours to days, but I have also not seen this occur. Nobody knows what will happen until it happens. I'm sorry that you were misinformed, which you will learn seems to be the way it goes with BPI (Brachial Plexus Injuries) when you are talking with people who have a little or no knowledge about BPI/Erb's Palsy.
Doing range of motion (ROM) exercises is excellent. Good for you for learning them and doing them already!
I would recommend that you schedule an appointment with a BPI Specialist...someone with expertise in the area of BPI. You are in Wilkes Barre, PA, so you are very close to Dr. Scott Kozin at Shriner's Hospital in Philadelphia. We have used him and still do as many parents on this site do. Here's his contact information: 1-800-281-4050. There's a medical resource directory on this website that lists many terrific doctors as well that are located across the country that many parents will atest to...please check it out. My point is...if you had a problem with your heart, you'd see a cardiologist. If you had diabetes, you'd probably consult with an endocrinologist. If you had an issue with your kidneys/bladder then you'd consult with a nephrologist. So it only makes sense that since your daughter has a brachial plexus injury (Erb's Palsy), then she should see a specialist who has extensive knowledge in that area.
When my daughter was born, she initially only had finger, hand, and wrist movement while the rest of the arm was flaccid (not moving). She did not move any other part of her arm until she was just about 4 months of age, and then she just flinched her shoulder a tiny bit. It was so subtle, that my husband and I were doubting ourselves if we had actually seen it or not until it happened again. What a joyous day that was. She has been in OT and PT since she was an infant, and now just gets OT services. We've done aquatic therapy when she was younger (taking a break from it right now). She's taken up tap and ballet instead. She's had one surgery at age 25 months when her shoulder was subluxed (partially dislocated as shown on an MRI, which Dr. Kozin did that surgery and it was a wonderful outcome). She's had a few different splints/braces, and currently wears TheraTogs all day. She has some limitations, but usually most people don't mention noticing them to us. She is 4 years old now and she can climb on the playground equipment (although I'm nearby scared to death sometimes), rides a bike with training wheels, can do a somersault, has many friends, is a chatterbox, likes to dress up like a princess, knows she has Erb's Palsy and doesn't seem to be slowed down. Recently she's been working on trying to do a bridge (where your hands and feet are on the ground and your belly is pushed up in the air so you look like a bridge). She's been trying to do this since she started dance class in September. She couldn't even come close to getting her right arm up by her ear to do this, and just in the past month, she's figured out a way to place her hand there before starting the bridge, and now can do it without anyone supporting her for a few seconds! Children are resilient and strong willed. They compensate (even when we don't want them to), and they laugh and giggle and surprise us in so many ways. You'll learn a lot from your daughter.
And congratulations on Samantha Jane's birth!
Tanya in NY
Amber's Mom, ROBPI, 4 years old
Message was edited by: Tanya in NY
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
-
JamieMarie'smommie
- Posts: 178
- Joined: Thu Apr 14, 2005 11:21 am
Re: Samantha Jane
melissa,
I'm so sorry that your daughter was injured. PLEASE dont blame yourself it is in NO way your fault. My daughter was also a 10+lb baby and suffered a ROBPI (Right obstetrical(sp) Brachial Plexus Injury. I did not have an epidural and my daughter was still injured. I would say try to get in with one of the BPI specialists in your area. I also had the same problem of blaming myself for Jamie's injury until a friend gave me the perverbial slap up side the head and said to remember that is was not my fault and that I needed to straighten up and do whats right for my child.
I cant help you with what your husband feels because Jamie's father left me while i was still pregnant and is just coming to grips with what Jamie has had to deal with in her 2 years of life.
I really cant tell you if your daughter's injury will heal on its own or not and like i said before try to get an appointment with a BPI specialist. If your willing to travel to Boston Dr. Bae and Dr. Peter Waters are both awsome drs. There at Children's Hospital Boston.
Amanda (mom to Jamie Marie 2 yrs old ROBPI)
I'm so sorry that your daughter was injured. PLEASE dont blame yourself it is in NO way your fault. My daughter was also a 10+lb baby and suffered a ROBPI (Right obstetrical(sp) Brachial Plexus Injury. I did not have an epidural and my daughter was still injured. I would say try to get in with one of the BPI specialists in your area. I also had the same problem of blaming myself for Jamie's injury until a friend gave me the perverbial slap up side the head and said to remember that is was not my fault and that I needed to straighten up and do whats right for my child.
I cant help you with what your husband feels because Jamie's father left me while i was still pregnant and is just coming to grips with what Jamie has had to deal with in her 2 years of life.
I really cant tell you if your daughter's injury will heal on its own or not and like i said before try to get an appointment with a BPI specialist. If your willing to travel to Boston Dr. Bae and Dr. Peter Waters are both awsome drs. There at Children's Hospital Boston.
Amanda (mom to Jamie Marie 2 yrs old ROBPI)
