Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Friday, October 25, 2013

H.A.L.T. - Take Care of Yourself

"Don’t sacrifice yourself too much, because if you sacrifice too much there’s nothing else you can give and nobody will care for you.” ―Karl Lagerfield

Mr. Lagerfield not only knew fashion, he knew human nature.

I saw a post from a new Mom who recently brought her adorable CDH baby home about how she had not taken a shower, truly felt she didn't have time in taking care of her child and this inspired this post.  Often times parents, expecially those of these children put their own basic needs at the bottom of their endless to dos they do on an hourly or daily basis and the results are not good.  This also applies to our grieving families too  Grief is very hard work. 

H.A.L.T. is a self-care tool.

H is for hunger, we need fuel to live, nutrition to keep our energy levels up and  lack of nutrition can lead to illness.  If you just can't make meals, stock up on healthy snacks, drink tea (herbal is best but black tea is fine too) through the day and water rather than caffeinated drinks all day.  You will not "crash and burn".  Ask others for help and be specific.  If you know your good friend makes the best vegetable soup ask if they will make you some to get you through this overwhelming time!  Most great friends would love to help and that is a very small thing that is truly appreciated.

A is for anger.  Often times with this diagnoses of CDH there is anger.  Why does a child, mine or anyone else's child have to endure this birth defect?  We are robbed of the perfect pregnancy and the typical ideal birth and going home.  It isn't fair, nor is life but we hope through it all it balances itself out in the end.  Do not suppress your anger.  It will manifest itself and come out in unproductive ways.  Writing about it can help, exercise can help and expressing it can help in a controlled way.  If you have trouble with this, do not be ashamed of asking for help from a professional counselor or clergy. 

L is for loneliness, our experiences can make us so isolated from the rest of the world.  There are wonderful on-line groups through forums or Facebook where you can communicate to other new or grieving parents who understand what you are going through.  Often times one person will express something others may not have realized they experienced or are going through themselves.  Feeling that connection can help.  For grieving families look into local groups of Compassionate Friends or others which may meet once a month.  For couples, take at least a couple of hours a month to have a date.  Go for a quick dinner, an ice cream cone or a walk around the block.  Listen to one another, it doesn't mean you are both going to be on the same page but respect what the other is going through.

T is for tired.  This is a tough one.  Often times many of our families have suffered with insomnia.  It is a nasty side effect of being a family of a CDH baby sometimes.  Some of the sleeplessness is normal for new parents and grieving parents too.  Try to get into a regular routine. Do not feel you have to do everything at once.  Pick one thing to "keep up with", laundry comes to mind and let the other things slide so you can rest or sleep.  If you continue to have problems sleeping or getting enough rest, consult your doctor who can help and come up with a solution.

Above all - realize all combined, you are far too overwhelmed to take care of anyone well and often times we lash out at others.  Apologize for this and do not make any judgements, hard decisions or take action until you HALT and rejuvenate yourself.  You can't take care of others if you don't take care of yourself first.  There is no shame in asking for help, in fact, it is a sign of strength to know you are overwhelmed you need help. 

Friday, October 18, 2013

We are often contacted when a family just learns their unborn or new born baby has been diagnosed with congenital diaphragmatic hernia.  We offer to send them a package with information we compiled from our families, painstakingly edited it and had medical advisers review and edit the information also.  In January, we also had a copy righter review them so they were easier to read.  We also provide infant blankets, hand print kits, Socks for Surgery socks, Guava Infant Mittens and a variety of other things donated by families we have on hand at that time.  We then hope and pray their baby will be of the 60% who will survive.  In some hospitals, it is up to 75% or higher.

Very often parents contact us after their child goes home or becomes an angel and they tell us how much they are amazed with the CDH Community, those that have reached out and encouraged them when they felt helpless or at their lowest.  How they found comfort in the words we wrote them, the items we gave them or the kindness of complete strangers who have this CDH Connection gave them.  How can they ever repay it?  They do, in turn they pay it forward by reaching out, being kind and keeping other babies and families in their hearts.  So much sometimes they must take a break, but they come back.

This blog post is about thanking all of you for reaching out, stepping forward, sharing your wisdom and children with those who just begin this journey forward.  We know not what will happen but we have hope that their child will be one that does pull it out and Kick CDH Booty.  Even the angels do some butt kicking of CDH and are miracles too.

Just remember to take care of you through this all too!  Thank you!