How do you deal with life after CDH?
There are so many emotions that come along with this birth defect. The ups and downs can be daunting. It is overwhelming at times. Know you are not alone.
Moms and Dads take care of yourself. Get rest! You can't help your baby if your mind is not working because of lack of sleep. Ask your parent or a friend to stay with your child so you can become refreshed. This also applies when your child comes home.
No matter what stage of cdh you are currently in you must do a few things to help yourself, "Move along". First you must accept that life will now be different. (You most likely learned this if your baby was diagnosed in utero.) You will probably never look at life the same again. It often scares you when your child is called, "Special needs". It only means that they need more care.
Secondly you will need to acknowledge that you did not cause your child to be born with Congenital Diaphragmatic Hernia. I will bet that you've tried to suck yourself down the "guilt" hole. Please don't go this direction. I can assure you there was nothing you could have done differently to avoid having a CDH child. You did not make this happen. It wasn't because you didn't take a prenatal vitamin. It wasn't because you exercised during pregnancy. And it was not because your stress level was so high. It was simply this, when your baby's diaphragm was forming the message got lost. Therefore causing the diaphragm to remain open or not seal properly. The organs just followed gravity.
Now depending on how severe your child's defect will determine how much intervention and care is needed after the NICU stay. Many hospitals will teach you how to feed your child through an Nasogastric tube (ng tube) or a Gastrostomy tube (g- tube) if needed so you can get them home faster. If you child's lungs are not strong enough to breath on their own or they have other respitory issues they may continue to be on the ventilator or oxygen. The hospital can also train you how to care for your child's vent needs so they can come home as well. Nursing help is often available to those children who go home with a ventilator.
So now you've adjusted to life. You've taken your baby home and another medical issue arises. You are back facing another long stay in the hospital. If at all possible have someone stay with the child at ALL times. This is very important as someone needs to always be an advocate for your child. They need a voice. Follow along with the doctors orders and make yourself familiar with new medicines and possible procedures. Ask questions and get involved. Make a check list of things you are concerned about. Document as much as you can. Don't rely solely on doctors and nurses for your child's care. And as soon as your child is better you will be again given the option to continue their care at home. This may now include more things for you to do.
It may seem overwhelming at times. It is very overwhelming. Let me give you some encouragement, "You can do this!" I was so shocked to find all that I did just to have my daughter at home. In my wildest dreams I never imagined caring for my child with an open abdomen and a central line. But you know what? I did it! You can too! Make sure you are well taught and have plenty of instructions. Follow them one by one and you will get there. Many times kids become drepressed in hospital settings. They need to feel loved and secure. Healing also is faster at home.
Be careful not to dwell on why your child survived and others children pass away from this birth defect. You will not help yourself heal by feeling guilt. You will never be able to understand why. It will never make sense.
Healing takes time. Feelings and emotions will come right back to you. Many things will trigger memories. You will be fine one day then feel like crying the next. This is all very normal. Remember you just went through a very traumatic event. If you feel too down please visit your doctor.
Family and friends may not understand all the feelings you are going through. This is normal. Try to contact another cdh Mother or Father to be able to express your feelings and concerns to. Sometmes all it takes is a few minutes on the phone or through an email to feel much better about a circumstance.
And last of all be PROUD of yourself. You've been through a lot. You are coming out stronger than ever before.
~Terri L. Helmick