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.