Happy 11th Birthday ...

I don't just think of you on your birthday, I think of you every day. Like my shadow, you are always there. No one can experience having a beautiful baby girl and then having to let them fly - and it not being with them always. It is a privilege to be there for a birth, it is an honor to be there for a death.

Death isn't the end, if you are faithful, you know there is much more to life then the struggle we have here.

I see you in the sunshine, I hear you in a child's laugh, I feel you as a breeze caresses my face. A spirit like yours could never be contained. And I silently remember.

You are always my Friendly Shadow, many don't notice but I always know you are there.

Happy 11th Birthday Cecilia. I love you to the moon and back.

What is it Like to Have a Baby with Congenital Diaphragmatic Hernia

Imagine that you and your partner are expecting a baby.  The thrill of the whole thought – another little being.  The whole thing is a bit overwhelming and exciting.  About the time many are diagnosed, is the 20 week ultrasound.  Most couples go to the doctor excited to perhaps find out the sex of the baby and/or just to get a glimpse of this little one before they are born.  Whose mouth and nose does this little one have?  No one expects to be told their child has something wrong. 

You are in a darkened room in order to see the ultrasound monitor and the tech is actually measuring the size of the head, bones and checking to see the organs.  Then they see that something isn’t right.  It is hard to not disclose this to the couple who is excited to see their baby, the hands the feet the nose.  In that darkened room or perhaps after you are led to an office after the ultrasound, a health professional will then inform you that your unborn child has a birth defect called congenital diaphragmatic hernia.  The survival rates are approximately 50 to 60% and they must tell you that the treatments they endure to save their lives may cause lifetime issues.  They also have to tell you that congenital diaphragmatic hernia itself because the child’s organs did not form correctly in development may have lifetime issues.

You are then told there are options.  Fetal surgery may be an option but depending upon where you live and the availability of surgeons who specialize in this, it could not be a financially feasible one.  It also depends upon the mother’s overall health and the severity of the diaphragmatic hernia, so you must qualify to have this option available to you too.  Your insurance coverage may not cover such a procedure.  It is highly experimental even today.  One day it may not be.  You are also told that you should have this infant, if you continue this pregnancy at a level 3 or higher NICU at a Medical Center that has had experience, even with the fetal surgery you would need this too.  They may require ECMO, a heart lung bypass in order to save their lives.  To imagine your unborn child hooked up to a heart lung bypass?  It is overwhelming.  This isn’t supposed to happen.

You will also be given an option to terminate the pregnancy.  You just passed the 12 week point where many couples start to breathe easier because you are past the crucial point of miscarriage in the first trimester.  You are not supposed to be making life and death decisions for your child.  You are supposed to be planning the nursery, picking out clothing and the only worry will be if you truly think you are up to being a mother or a father.  Those worries are enough in themselves. 

Now you are given options if you were prediagnosed prior to birth.  You must make these decisions that will not only affect your lives, but your whole family.  You will wonder if your choice of hospitals is good and question if you should go to another.  None of the choices are easy.  You will also be asked to undergo an amniocentesis to rule out any other abnormality with this unborn child.  Many times there are none.  Sometimes there are other issues. 

Only other parents who have faced this understand the unexplainable feelings, the emotions that go from fear, to devastation to determination.  Only other parents who have been there and done that can relate to this.  Many of us were asked, “How can you?”  We just do.  We have truly little choice in the matter. 

If you choose to interrupt this pregnancy, all the experts have told you based upon countless tests that your unborn child’s chances are less than 50%, you must endure the stigma.  You wanted this baby and you chose not to have them suffer.  It is not a selfish act but a selfless one.  Some will state if you didn’t go full-term this child doesn’t count – so not true.  You will also change because of this experience. Your child will never know the pain and will always be in your hearts. 

If you choose continue the pregnancy and hope and pray for the best you will also have doubts and wonder if you can endure seeing your small infant go through surgery, recover and endure.  If you are the mother, you will have this constant reminder moving and kicking within you.  If you are the father, each time you see your partner, you will have this reminder.  The thoughts of what you both will have to endure for your child and what your child will endure will not be far from either of you.

Then there are those couples who were expecting a healthy baby and their child is born and goes into repertory distress.  They whisk the baby away and start intubation and assessing the condition of the infant.  You may not hear anything for hours.  Not knowing what is happening to your child, to this baby you have a nursery prepared for, a life planned out for and now they are taken from you.  The doctors will then come to you and tell you of this birth defect which has a 50% mortality rate.  Your child may be treated in the hospital you delivered or many times may have to be transported to another for treatment.  You are in shock.  What in the heck is a congenital diaphragmatic hernia?  How did that happen?  Why didn’t they see it before?  When can I see my child?  When can I hold them?  Those that had the diagnoses prior to birth at least know of the protocols and procedures that health care institutions do to attempt to save the lives of these babies.

Both will sit by the bedside and pray, hope and wonder what is next?  You face the unknown, the lack of control, the overwhelming feeling of parents just to pick their child up who is suffering and ill cannot be acted upon.  This isn’t supposed to happen this way!  Why your child?  No one can give answers to that question.  You go from watching the monitors to not watching the monitors to asking if they have had a good day or a good blood gas for the past hour.  Sometimes you cling to just a good minute.

If you are blessed enough to have your child endure surgery, possibly ECMO and recover from both then the next hurdles are feedings and weaning the painkilling drugs they have been on since birth.  This is a slow process.  It takes time and patience.  Many of these children due to the organs affected may have gastrointestinal reflux and due to the tubes down their throats oral aversions.  You wonder how you are going to take care of this once fragile infant at home.  You are warned of their lung condition being fragile, that they may not have the immunities other children have and must be guarded against a society full of germs.  Your best friend will be anti-bacterial soap and hand sanitizers.  (Next to an abundant supply of burp cloths for the reflux.)

And if you are faced with letting them go, allowing them to earn their wings, either by their choice or after being told that everything that could be done has been and there is nothing left to do.  That is the worst loss, but each and every parent who has had ever to let their child go in this way will tell you, “We just knew it was time”.  The most unselfish act in the world is to tell your loved one, “It is okay to go.”  They will be out of pain, not have to endure any more but that is when your pain will immeasurably increase. 

It takes courage, faith, strength you never thought you could have to endure having a child with CDH.  You will be the most devastated you ever have been, you will be more exhausted both physically and emotionally than you ever have been before.  You will also know that no matter what life throws at you now, it is small compared to what you have endured.  

© Breath of Hope, Inc 2010

Congenital Diaphragmatic Hernia Awareness Day...

Happy 10th Birthday Cecilia...

A Great Soul services everyone all the time. A Great Soul never dies, it brings us together again and again. - Maya Angelou

Some may not say you are a great soul - but you will always be in my heart. The lessons you left, the lessons I've learned - I'll always admire you for them. I'm still learning and that is important in this mortal world. Some lessons are harder than others.

Then there is the acceptance of everything that has unfolded in my life that has connected me with others. I accept that you chose wings over feet and can't say I don't blame you! It took time to be at peace with that acceptance too. The selfish me wanted you here with me no matter what the consequences, and now I know it is as it should be.

It is acceptance that others might feel when they understand their child will not always do what they think they should do, or that their spouse is incapable of putting the toilet paper on the roll. You hit the serenity of it all - and just move on to more important things that need to be focused on.

I will always honor your life, be in awe of it, welcome the signs you send every now and then and always love you more and more every day. I also accept that you are the child I must love in my heart - spiritually. Learning to do this and accept this takes me, I believe to an enlightenment many never know. (Many I pray will never know.)

Happy Birthday Baby Girl - until we meet again...with love from the moon and back,
Mommy

Time Heals All Wounds?

It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone. - Rose Kennedy

As a Mom who also has had a child choose wings over feet, as someone who has experience life - I have to agree with this quote. I think we accept more of life's unfairness, we endure the storms and enjoy the sunlight when it comes. We always remember and from our experiences it shapes us to the people we become.

Transformations through Grief

When a parent looses a child, there is no word for it. When a child looses a parent, they are an orphan. When a spouse looses another, they are a widow or a widower. We are all at a loss of words when a family has a child die. The best thing anyone can offer the other is their heart and a hug.

I have been thinking a lot of my own grief, others grief and what it all is about in this whole process. How I've transformed and how others have also. We are never as we were before and that can be frustrating for us and for those around us. We loose friends, relationships we had once prior are no longer because we learn what truly is important. Sometimes others just can't be around us. Part of the process.

Too many infants are still loosing the battle to congenital diaphragmatic hernia and it is frustrating because ten years ago, the stats were the same these children over all have a 50% chance. I hate it when parents have to walk down the same path as we did ten years ago. I cry – I wish I could go to the ends of the earth and just give them a hug. I know all too well what it is like to receive a hug from someone who also had their young child die. No words are needed – it is a silent knowledge and comfort. Though both wish neither had the experience – we are thankful we are not alone.

The first few years – parents and families grieve hard – some do it for months – hard, some do it for a period at first and it gradually ebbs. The first few years – people should be kind and not make any judgements. Until you have walked that path, you don’t know and all grieve and react differently – respect that. Only if someone is continuing to deeply grieve – that is depression and you need help for that.

Over the last few years – I also have discovered a technique which wasn’t available to Cecilia – and it explains why she ended up on ECMO. When she was born – vent immediately at the highest setting. (They don’t do that now – there is a gentle vent technique – which became widespread a few years after her death.) I now know what put her on ECMO and caused the lung bleed. We don’t have do-overs. We can wish, would have, could have, want to but in the end – we don’t have that – we have to accept what is – is. That takes time. I’ve far passed that time.

So – grief is individual but if it goes on too long – see someone you trust to help – it isn’t weak to ask for help, it actually is a sign of strength. For those trying to help us through our grief – be kind – be open minded and just be there – but also know sometimes we want to be alone too. It is hard because this is something no one can fix and nothing will ever make it right. An injustice of life we have to live with and learn to live without. We want more than anything to be sure that our child’s case helps others survive. We want no one to go through what we have – and it isn’t because we feel we deserve it or that others do not or we want to be the one and only. The pain we feel and felt – like no other pain – and you wish that pain on no one – ever.

Life is supposed to make you better, not bitter - and our experiences in life too - if they are learning to live without and move through this life to make a difference.

Quotes About Hope..

Hope is the only bee that makes honey without flowers. ~Robert Ingersoll

Hope is faith holding out its hand in the dark. ~George Iles

Hope is putting faith to work when doubting would be easier. ~Author Unknown

Hope is the physician of each misery. ~Irish Proverb

Hope is grief's best music. ~Author Unknown

Nature - an Angel's Favorite HIding Place

Ever felt an angel's breath in the gentle breeze? A teardrop in the falling rain? Hear a whisper amongst the rustle of leaves? Or been kissed by a lone snowflake? Nature is an angel's favorite hiding place. ~Carrie Latet

World Wide Children's Memorial Day...

Light a candle at 7 PM your time and extinguish it at 8 PM so all the angels can see a light around the world. This day was started by Compassionate Friends an organization for parents who have had a child die, no matter what circumstances or what age. Either way it is a loss we learn to live with and hopefully turn around into something more positive.

http://www.compassionatefriends.org/

The Remembrance Book:

http://www.compassionatefriends.org/Other_Pages/THE_COMPASSIONATE_FRIENDS_REMEMBRANCE_BOOK.aspx

The Little While - by Darcie D. Sims

I never tire from reading it each Thanksgiving....
_____________________________

Many years ago we were faced with our first bereaved Thanksgiving. I was worried. Our infant son had died in September and no one felt much like celebrating anything, let alone gathering family together to express our gratitude. Gratitude! About what???? What on earth did we have to be thankful for?

Our little guy had died after a horrible battle with a malignant brain tumor, leaving us exhausted physically, mentally, emotionally and financially. There was little to spend on a lavish meal and I did not have the energy to even think about hosting a family gathering. But despite our unwillingness to participate in the passing of days,Thanksgiving did arrive and we did have a small family dinner. I think the turkey was dry, the mashed potatoes lumpy and I'm not sure we even had rolls. I set the table with our best crystal and china, in a weak attempt at being"festive" but the only things that sparkled during that meal were our tears.

It is a tradition in our family to have the youngest at the table say the blessing, so it fell to our five year-old daughter, Alicia, to find some words of thanksgiving. I was almost glad it wasn't my task to speak of gratitude when there simply wasn't any to be found around our table! How awful of me, a grown woman to wish such a job onto a five year-old!

Alicia refused to accept her assignment. She refused in the manner of many 5-year-olds and it became a battleground between mother and daughter, adult and child. She simply looked at me and said what all of us felt, "What's there to be thankful for this year?" We argued intensely and her refusal guaranteed the silence I dreaded.

I knew this years' celebration would not be survivable. Her stormy face told me to forgo the family blessing. We ate in grieving silence; each caught in our own web of stories, tears and sadness. About halfway through the meal, however, Alicia announced that she would say "something" at dessert.

I wasn't sure what "something" meant, but I figured dessert was something to be thankful for!As the pie was served, Allie told everyone to "hold hands like the Walton's". Slowly, awkwardly, painfully, we reached across our grief and clasped hands, forming a family circle around our table. Allie bowed her head, took a deep breath and in her 5-year-old voice brought us the light.

"Thanks God, for the little while."

In our grief we had focused on what we had lost and worried about how we would survive another day. Alicia, with the wisdom reserved only for children, understood better than any adult around that table, the gift her brother had given us and the gift for which we are forever grateful ... the little while.
__________

And it ALWAYS makes me shed a few tears - the good "ah-ha" tears...

Peace,
Elizabeth

Quote - Very True...

When I despair, I remember that all through history the way of truth and love has always won. There have been tyrants and murderers and for a time they seem invincible but in the end, they always fall -- think of it, ALWAYS.-- Mahatma Gandhi.

Finally I did it...

I finally created a Montage for Cecilia. Something on that never ending list of things to do but always fell to the bottom.

99% Suvival Rate Would Be Nice - A Goal...

We have had too many precious babies fight hard against congenital diaphragmatic hernia and still loose the battle - not the war. The war is still going on with their parents, grandparents, families and friends. There is a need to have more effective treatment for these babes and for lung function to be improved so they can survive.

When Cecilia was born in 1999, they had little they could do with the number one killer to these babies - pulmonary hypertension. A few years later there were more drugs out there that could be given to these babes to get them to the point of recovering and those lungs to the point that there may be little need for the drugs or none. Some children may still need the medications - some do not. The point is - it is out there now to help. We need more, so much more.

It just doesn't seem to be enough out there.

I am not asking for a "cure" - I have seen long enough and researched congenital diaphragmatic hernia long enough to know it is a naturally occurring birth defect. I would like to see the survival rate at 99% - nothing in life is 100%. Next is to have more out there for families and children to have the best therapies so when they do survive they can be the best they can be and get the help for them to have a good quality of life and overcome as much as they can.

Some days I feel so helpless in this war on this monster...

In The Combat Against Congenital Diaphragmatic Hernia

Never give in... never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force... never yield to the apparently overwhelming might of the enemy. ~Winston Churchill

Giving Hope

About 7 years ago, I had a call from a mother whose son was admitted at the University of Virginia Medical Center NICU. She was of course scared and had never heard of congenital diaphragmatic hernia before. I was still "in grief" but happy to try and help this mom. She had been told of ECMO and that does scare parents, it is after all the last resort. I spoke to her and then I visited.

It sometimes is hard for me to enter UVA. I am fine if I don't smell antiseptic I am fine. I think one visit with this mom I had to go into the Chapel for a moment to keep from hyperventilating. I did go visit that day but I realized how much something little could just upset me. Her baby boy is fine and thriving today and she has gone to school and has become a Physical Therapist.

One thing about the visits I recall so vividly. I was waiting in their waiting room on the 7th floor, that really needed to be updated and has now. A young man came off the elevators and I believe his mother was with him. She went to go find some one to give them some update. It was obvious they just traveled from somewhere to be with his newborn. I could see the tension in his shoulders and in his body language. He was vividly upset and worried. I started to ask him just simple questions.

"Is your baby here?" I asked.
"Yes, they just transported him here." he answered.
"Where are you from?" I asked.
"Harrisonburg. His mom is still in the hospital there." he answered.
"You know your son is in one of the best hospitals in the world here. The staff and doctors here will do everything in their power to help your son. They can also take a picture for his mom, just ask them." I told him.

I could see his shoulders lower and his body relax as I also told him that there are doctors there that are part of cutting edge medicine that saves lives and also gives quality to lives that they save. I told him I was there visiting a mom whose baby was also there but my own daughter was there and I knew they did everything they could for her. I told him she didn't survive but there are more there that do survive and that her condition was server.

I was at the time - trying to comfort a parent who was obviously scared, worried and overwhelmed. They called him to come back to the NICU and I told him - no question he asked was dumb and to be with his son because they know their parents and know people would be thinking and praying for them. I never got his name. He never got mine. I just hope that that made the difference to give him hope.

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.