Marching On...

It has been over nine years since we received the diagnoses "congenital diaphragmatic hernia" and our world changed. Since that time, I grieved, I grew and I changed. I learned and I stumbled along the way. Doors opened and some closed. I learned to accept that there are things in this life we have absolutely no control and it is how you handle those things. I became a better parent to my oldest daughter and later had Cecilia's little brother.

Hard to call him her little brother, he was always bigger than she. Her spitting image - except she had MUCH bigger feet. Many know I have a thing for baby feet - I think they are the most adorable things on this earth. What I regret most with Cecilia is not having her hand print - I have her foot prints - but not a hand print. Why the expectant families who join Breath of Hope's Listerve receive a Hand print Kit with their packages. (Yes, I know a bit of me BUT most hospitals take foot prints.)


In the process of living as a Mom of an angel I can now say I have more good days and a few might be bad. Her Birthday gets to me still. Christmas is still a forced effort but not as bad. Early in the journey - I rarely had a good minute and gradually they came.


I compare parental grief to crawling into a cocoon and feeling alone, isolated and dark. Gradually you come out of that - at your own pace and in your own time. You learn to embrace your self - your new self and know you still love your child. True and unconditional love never dies - it grows and continues it is a matter of how you project that in your life. Obviously, I still have lessons to learn and am needed here. I accept that. There were days I didn't like that but I accept it.


I have learned that parents of those that survive this horrible birth defect also grieve. They have taught me so much about Cecilia's case and also about congenital diaphragmatic hernia and the treatments and options out there. Her story was written in January 2000, I have edited it over the years but it remains for the most part as it was then. Before her, when a baby with CDH was fighting and their kidneys shut down, every case I had read - the parents were asked to let the child go, there was no hope. The University of Virginia CMC NICU staff didn't do that - they offered hope that perhaps she could overcome. Since her medical case, I have heard of at least seven others that they have used the CVVH machine for hemophiltration. I also have learned that the kidneys failing had nothing to do with her genes but ECMO itself. You see for the kidneys to work - they need that heart beat. ECMO takes that from the patient as it is protecting the lungs and heart and allowing them to rest. Isn't it amazing how all our systems work together? Today, most hospitals try to use ECMO for a shorter period of time. Today they know a bit more. There are drugs out there that can help with pulmonary hypertension. Today sometimes they still do not work.

This week - five families will hear of congenital diaphragmatic hernia for most likely the first time. It is a "naturally occurring" birth defect that isn't really natural. There definitely are no natural treatments for it. It requires venting the baby, possibly ECMO, drugs to help with various needs and the window of opportunity to do surgery and then of course prayers and hope. With each of them it comes down to one thing that determines their survival - lung function. Without it, they don't breathe, their hearts will stop and nothing else will heal. It isn't necessarily the size of the lungs but if they can work properly.

Over the years, I have seen children survive this birth defect and thrive - never showing many residuals in their future. I have seen other children with minor issues such as reflux or eating issues. I have also known of children that battle more issues as a result of CDH. I have known of some that live for six or twelve months or several years and the complications of treatment or CDH eventually take their toll and they die. Their parents have to be pro-active when it comes to their care.

There needs to be more education even among the medical community about these children who do survive it. They are not going to be on a "normal" growth curve. They were born smaller, they were delayed in development and in feeding because their lives where in balance. It was more important for those lungs to recover. It was more important to save their lives. So they are a bit smaller, so they are a bit delayed as long as they are moving forward that is the most important thing for them. Their parents should be praised. Sometimes there are set backs because of illnesses or colds or another diagnoses. Take that into consideration.

One thing I have learned is each person is so individual. Each of these children who have CDH are too. No two cases are exactly the same. Why do we compare ever? It helps if we have guidelines but if these children - all children are progressing - we need to embrace that and understand that if we start treating the individual that is the key to progression.

We also need much more awareness of this birth defect. It occurs just as often as Cystic Fibrosis, Spina Bifida and Downs syndrome in healthy mothers between the ages of 19 to 34. More know about those birth defects. The difference is that in half the CDH cases, they do not survive. I also have heard it called "rare" it isn't rare! Speak to the Nurses and Doctors at any hospital that is equipped to treat CDH babies - their is always ONE in their NICU/PICU. I know of ten families in the city I live that have had children with CDH and there are probably much more.

So I march on...with an angel in my heart - and many others too.