Part Two: If your friend or family member has a child with EB...

This is a post for the family members and friends of those who have a baby or child with EB.

When you have a loved one gives birth (or adopts) a child with EB, their entire life is turned upside down and it will never be the same again.  A lot of the time family and friends want to help the family but are not sure how to help a lot of the time. This post will give you many examples on how you can help out and make this time in your loved ones life a little easier!

Don't ask if you can help, OFFER to help!  9 times out of 10, parents of a newborn with EB will not want to ask for help even though they really need it.  So instead of asking what you can do, offer something to help with some you can or are able to do.  Here are just some examples of thing that would be helpful to the family while the baby is still in the hospital

• offer to be the family spokesperson.  Be the one who updates everyone else, or the one who researches EB and relays the info to the family. 
• make a meal (or two) and bring it over to their house or to the hospital.  Organize a meal schedule among family and friends (there are some great websites that you can create an account for the family and other people can sign up to bring meals)
• if they have pets offer to stop by to walk the dog or feed the cat, water the plants, mow the lawn,  clean the house, etc...something that needs to be done but isn't on their list of priorities right now.  

Once the baby comes home the family will have other needs.  Some more examples of ways you can help:

• offer to come help with bandages changes.  Most cases they take 2 or 3 or sometimes more people to complete.  It is always good to have an extra pair of hands.  And if you are squeamish about blisters and open wounds you can help with setting/pre-cutting up the supplies or help with clean up.  Or if they family has other children you can help with them during dressing changes.  You can even set up a schedule for family and friends to take turns coming over to help each day.
• meals brought to them at this point will still be helpful
• go over to assist with laundry and housework or just to sit and hold the baby so the parents can get a quicker shower, eat a meal together or just take a nap!
• if there are other children in the home, invite them over for play-dates or sleepovers or just go over to play with them.  Their lives have been turned upside down as well and they are probably scared and upset about what is happening to their new sibling.  
• if their other kids are in school, offer to help drive them to and from school;  taking an EB baby out in the car is not an easy task.
• if you are planning to run out to the store call and ask if you can pick up anything for them.  Again, taking an EB baby out just to pick up a gallon of milk is a HUGE ordeal.  
• offer to going along to doctors appointment; an extra set of hands is always good to have!  
• offer to learn how to take care of the baby so the parents can get some time away together sometimes.

If you don't live close by or are unable to help physically, here are some other ways you can help:

• start a fundraiser for the baby; even with the best insurance it doesn't always cover everything, particularly things like special diapers, clothing, over the counter ointments and medicines as well as doctor co-pay and prescription co-pays.
• donate things like gift cards to grocery stores, gas card or gift cards for restaurants that offer take out.  
• a large group of people could chip in and hiring a cleaning service for the family for a few months or even a year!
• email/call/text/send cards to the family letting them know you are thinking of them and/or praying for them. 
• make a donation to an EB organization in the child's name
• educate others about EB; spread awareness! 

things NOT to do/say to the family of an new EB baby

• don't tell them they did something to cause this or it is their fault this happened
• don't tell them its better to let the child die or give him/her up for adoption
• don't ignoring them or pretending EB doesn't exist
• never, ever tell them NOT to have anymore kids; that is their decision not yours!
• don't offer them some "cure" you heard about from your neighbor's grandmother's nurse.  EB is genetic and unfortunately there is no magic pill, or cream, or food that will make it go away.   
 

 

*disclaimer-I am not a medical professional. I have lived with EB myself for 35 years and have been an EB mom for 10 years.  These are things I have learned along the way and as well as input from other EB parents. 

Part One: For the parent of new EB babies...

The top 10 things new parents of EB babies should know from the very beginning! 

1) You are NOT ALONE!! There is a very large EB community out there ready and willing to offer advice, help, supplies or anything else that you may need.  No matter where you live or what type of EB you are dealing with, the EB community is ready and waiting to help make this new journey a little easier for you to walk through.  Also turn to your family and friends that are offering to help!  If you haven't found it already, the EB Organization, DebRA, is a great resource for you!  They even have an EB Nurse, Geri, who is happy to answer all your questions and help in anyway she can!  

2) You CAN hold your baby!  There is always the fear of hurting your baby even more by holding them and perhaps even the doctors or nurses are recommending you DO NOT hold your baby.  However, you as the parent have a RIGHT to hold your baby and your baby has a NEED to be held.  It is something than can be done and be done safely.  The easiest way (particularly while in the hospital) is to get a regular size bed pillow (or egg crate foam) and cover with a soft blanket or one of  those disposable blue chux pads.  If you need to you can cover it with Vaseline or Aquaphor to reduce friction.  The best way to pick up an EB baby is to place your hand/arm along their side and gently roll them to one side.  Then, slide your other hand/arm under the back bottom and scoop them up.  NEVER pick an EB baby up under the arms, the pressure from your hands/fingers will likely tear the skin.  

3) There is always HOPE!  EB is not always a death sentence;  but EB is a life sentence.  There is no cure, and those with EB will have it their entire life.  People do not die from EB itself; but rather from the many complications that can arise thus making the lives of some with EB shorter than others.  But no matter the form you are dealing with, there is always hope!

4) Managing pain and itching.  While EB can be a very painful condition is can also be a very itchy one as well.  As wounds heal, they begin to itch, it is just the natural process in wound healing.  Unfortunately a baby can not tell you if they itch and therefore many people (including doctors) will assume a crying baby with EB is in pain and doctors will prescribe strong narcotic pain medications.  While those do help with pain, there are also side effects associated with them that doctors may forget to tell you.  Morphine is a common pain medication given to infants with EB when they are just a few hours old.  While morphine is great for pain, it can also cause itching and respiratory issues in infants; both of which are not good for a baby with EB.  The use of pain medication and which one to use is your choice and I am not here to judge or recommend one pain medication over the other, but just be sure to ask the doctor about all of the side effects and if the benefits out weigh the risk.  It is better to start with a milder pain medication and work your way up to the stronger stuff.  Your body becomes tolerant of pain medication after a while and you will need a stronger and stronger dose to get the same relief and if you start out with morphine there isn't much to step up to for more relief.  

There are medications for itching such as Benadryl and Atarax.  Both are anti-histamines which means they make you sleepy, but they really don't do much for itching.  Keeping the skin hydrated will help with itching and keeping the skin cool will help as well.  

  

5) Acid Reflux is so common in those with EB that it is best to assume your child has it until it is proven otherwise.  If left untreated, reflux can cause blisters and wounds in the throat and mouth.  And in some cases can also cause airway issues.  It can interfere with eating and sleeping as well.  It can be easily treated with medication.  The most popular among those with EB is Zantac and Prevacid.  Both treat reflux differently and only your doctor can decide which is best for your child.  But from personal experience Prevacid is better at controlling reflux than Zantac is.  

6)  Feeding a baby with EB can be tricky at times.  Some EB babies have no trouble eating and some struggle a lot.  Also, very few EB babies are able to be breast feed exclusively as it causes too much trauma and/or tires them out too quickly.  And THAT IS OK!!!  Its NOT your fault!!!  If you had your heart set on breast feeding you can still pump and give your baby your milk that way.  Many EB babies are only able to drink out of a bottled called a special needs feeder.  But every baby is different and it is a lot of trial and error with feedings sometimes.  

 

7) Diapers and Clothing can also be a challenge for EB babies.  Some can tolerate regular disposable diapers; some can only tolerate cloth diapers and some are only able to lay on a diaper and not actually wear one due to friction.  Other EB families have has success with Pamper Sensitive or Pamper Swaddler diapers.  For cloth ones, Fuzzi Bunz, are very popular among those with EB.  Unfortunately diapers can be a trial and error process too.  Clothes that are 100% cotton, seam free, do not have to go over the head are good for EB babies.  Clothing made of Bamboo are a good option as well.  Just like everything else, clothing can be trial and error too.   

8)  Wound Care Supplies.  Its likely the hospital your baby is in hasn't had many other EB babies (if any) before and it is likely not up to date on the current wound care supplies for those with EB.  Here is a basic list of commonly used wound care product used by those with EB:

Mepitel- good for areas of missing skin
Restore Contact Layer- also good for areas of missing skin
Mepilex- thick foam good for heavily draining wounds or area needing extra padding
Mepilex Lite and Mepliex Transfer- thinner foams for less draining areas or areas that need a little bit of padding. There is also a foam and thin form from Restore too.
Rolled gauze (The Conco brand is a favorite among those with EB)
Tubifast is a dressing retainer that holds everything in place and eliminates the need for tape.  This is just a basic list of supplies and there are many more things out there that might be useful once you know which type of EB your child has.

9)  Random pieces of info: You should avoid all adhesives and always pop all blisters before they grow and turn into large open wounds.  Everyone with EB is different.  What may work for someone else may not work for your child.  No matter how hard your try, blisters will still appear; that is just the way EB is. 

10) The last and certainly the most important thing is to TAKE TIME FOR YOURSELF!  I know that is hard for a mother to do, but its especially important for mother of children with special needs..  It is easy to get burned out very quickly.  Take frequent breaks, maybe a cup of coffee, or a bite to eat.  Even a shower or quick nap will help you better cope and be able to better care for your baby.  Plus you just had a baby, your body is still recovering and if you had a c-section its even more important that you take care of yourself.  You don't want to end up back in the hospital yourself with complications!   

*disclaimer-I am not a medical professional. I have lived with EB myself for 35 years and have been an EB mom for 10 years.  These are things I have learned along the way and as well as input from other EB parents. This list is by no means complete and is just the important things I feel first-time parents of an EB baby need to know right from the start!