How can the happiest day of my life also be my worst? My baby was born with Crouzons
|Two years had gone by since we decided on a second child. I was feeling down because we had been trying for so long nothing was happening. I had my daughter Terry from a previous marriage when I married John. This one day in particular I found myself home alone. I felt as if I should spend time with the Lord and seek him about the situation. I played a CD, danced before the Lord, and prayed. That is when the Lord spoke to me. Through a story, the preacher told towards the end of the program. That’s when I felt lead to write it all down. The preacher was telling a story about a woman whom he had met after a service. Her child had been born with a severe birth defect to its head. Then he gave scriptures of healing and said, “Trust God He will heal your child” at that time I had no idea what it meant for me. I folded the page and placed it between my mattress and bed.
Meanwhile, my father-in-law was due to fly in from Chicago to visit. He’d offered to accompany us to a Beverly Hills infertility specialist assuring us he’d pay for any procedure that could help. Ultimately we elected to try in-vitro fertilization and were due to begin the procedure later that month. Before we even returned for our first treatment, our anxious wait was cut short. A pregnancy test revealed that I was already expecting and all without any help from the doctors.”
In May of 1996, John and I, had our new baby girl we named her Samantha We were so happy!
That is up until the doctors came in and told us there were concerns about the shape of our baby’s head. Further testing revealed no obvious problems other than the shape itself but we were advised to follow-up with an appointment with a pediatrician.
We brought baby Samantha home, and the following day took her to see her pediatrician about her head. That Doctor was also concerned. He also recommended we go to Children’s Hospital to see a Geneticist.
When Sam was five days old, my husband John and I along with our parents headed for Children’s Hospital.Two blocks before we reached the hospital we stopped at a red light. The car in front had a huge decal of a rainbow covering its entire back window. Under the rainbow were the words “Trust God” I felt that was another message, telling us we’d have to face hard times ahead but God would help us through them. Judging by the look’s of my family’s worried faces, I felt they shared my concerns, waiting for the light to turn green, but no one spoke a word
We went on to the appointment we had with a Dr. Cobin a geneticist at Children’s Hospital. She spoke with us for a few minutes then checked Sam and excused herself saying she needed to see whether there were any results from the Hospital faxed in yet from when Sam was born. Later I learned she had already diagnosed Samantha just by sight, this was her way of breaking it to us gently. She left the room returned a few minutes later with a few more doctors they each looked Samantha over, checking and feeling around on her head.
Dr Coban finally tells us of a condition known as Crouzon’s Syndrome that causes this type of skull deformity, it also causes brain damage and a host of problems with speech, hearing, and vision, sometimes even brain damage. babies sometimes even need feeding tubes because they cannot swallow. Children with Crouzons will most likely need a number of surgeries to repair these different problems, some people require surgeries well into their adult lives. Because the bones of the whole skull are under developed and not formed properly. In an attempt to relate to us the statistic’s she told us, we had a better chance of winning the lottery then having a baby born with Crouzons. On the other hand, it just maybe that Sam just has a misshaped head and it’s nothing to worry about.
By the concerned look’s on the face’s of the doctor’s in the room and the number of them that had come to look at Sam. I started to suspect that I did have something to worry about.
Dr Coban again goes looking for the fax, when in reality there was no fax needed; she was just allowing us time to absorb all of that terrible information. My family was all in the room together John and I, along with our parents assuring each other that Sam is fine. We told each other this cannot be, our little Sam can’t have that syndrome, it was too awful to fathom. When Dr Coban did at last return, she confirmed our worst fears.
John just ran out the room and down the hall as fast as he could, running over doctors and nurses in the hallway to get out and away from what we had just learnt. I began to scream and cry. My mother had taken Sam out of the room at that point. The rest of what she told me is a blur. Everything seemed to be going in slow motion, yet my heart and mind raced, I was beside myself, and people were speaking and all I could hear is a low-pitched growl. I stood there terrified at the thought of my precious baby having all these surgeries
In conclusion, The Doctor told me something I would never forget, she told me this would be my new career in life, to learn about and deal with Crouzons. Our parents were trying to be strong, but were totally devastated.
I don’t even remember how we made the drive home; I was in hysterics the whole way home,
I think back and one thing I do remember is pulling into our driveway I got out of the car and remember falling to my knee’s and just pounding the pavement and crying out in agony. It took a few days for me to compose myself, during that time, I tried to do things to get my mind off the situation, and give my mind a rest.
I decided to go clean out my closet,
When I opened the door of the closet,
a shoebox fell from the closet shelf and a note fell out of the shoebox, it was the note I wrote that one day while watching the preacher on TV. to this day I don’t know how the note got into the shoebox.
I read the note over, and that’s when I understood everything! The woman, The Preacher spoke of was in reference to me having a Child born with a birth defect. I was amazed!
God wanted me to know, he knew what was going to happen more then a year before it happened, and he wanted to remind me to trust him!
I regained my emotional strength and we went back to see the doctors at Children’s.
We were on medi-cal at that time, we were told that Samantha would be assigned a team of Doctors. The list included;
A brain surgeon, a plastic surgeon, and an optometrist, and an E.N.T. and a dentist.
The team will each see her all in one day; we would go to each appointment having her checked by each doctor,
Then they would meet to discuss her issues and their findings with each other, and then recommend a treatment plan for Sam. They told us we would need to wait on California Children’s services to be approved; medi-cal alone cannot afford a Child like Samantha.
It was about a six-week wait to be approved for C.C.S.
Sam was being seen by doctors, but the major appointment was the one in six weeks, that’s when we started to spread the word that we needed deep, heavy prayer.
I am a strong believer in miracles, what make me believe I can ask for a miracle of this magnitude? Asking God to totally heal my baby of this horrible syndrome and make it as if she were born without it. I will tell you what leads me to believe I can ask such a thing in faith.
My father was diagnosised with colon cancer in 1990, my family prayed for the Lord to heal him.
Although he had surgery to remove part of his colon. We knew that cancer does not give up easy.
We prayed and the Lord was gracious and merciful towards us and granted my father an additional twelve years of life. In those additional years, my father witnessed the marriages of all his children and the births of our children. That’s not the only example of prayers answered for my family.
My older sister's daughter Dena was diagnosised with brain cancer at the tender age of eleven. With only a 2% chance of surviving her surgery to remove the cancer.
We desperately sought the lord for a miracle for Dena. she not only survived, but recovered completely and was given a clean bill of health after being cancer free for five years! She is nineteen now and in perfect health. . That is how I knew I could ask my heavenly father for this miracle.
The Bible passage "Isaiah 53:5" has very special meaning to my family it says
"But he was pierced for our transgressions,
He was crushed for our iniquities;
The punishment that brought us peace was upon him,
And by his wounds, we are healed.”
In Los Angeles we had two gypsy Christian churches at the time, and people started to come in groves to visit and pray with us. Also, the churches had started a prayer chain across America! We got calls from all over America from people telling us we were in their prayers.
Mean while the appointments we had prior to the team meeting were all good news! Sam was doing fine!
We learned that some babies would need some type of emergency surgery before the time came for the team meeting. With Crouzons, what happens is the skull is supposed to be in four sections at birth to allow the skull to squeeze through the birth canal,
But with Crouzons, the skull is fused together. And sometimes that causes Hydrocephalus (water on the brain) and requires a shunt to drain fluid, and it causes the head to become deformed. This added pressure on the brain can cause brain damage. So far, we did not have to deal with any of that.
I believe that was due to the hundreds of Christians joining with us storming heavens gates with prayers for Samantha.
It was now time for the six-week appointment. We were there the whole day, going from one building to the next, seeing each of the different doctors. Now more waiting, it would be a week before we get the recommendation. Again, we prayed for good news. And when we went back in the doctors told us she looked great!
She was in no danger.
There was no need for any surgery.
The doctors were in fact amazed that she was doing so well.
Of course, knew why, it was all the prayers. All the doctors had recommended was that we bring her in on regular visits. They would just keep an eye on her as she grows.
Samantha was a healthy happy baby,
We thought she was adorable with her tweety bird shaped head.
I had no problems with it at all. In my opinion, she was a beautiful little angel.
We continued with the visits, her brain function was great, her vision and hearing was fine. She did well with her feedings. She was just as normal as any baby could be.
Even so, we were still somewhat concerned. The next crucial appointment was when she was
Six month’s old,
They wanted to check her brain development,
Well by this time, Sam was already saying her first few words, mama, Dada. She made up a word for her bottle she called it Nunu.
Also, a few other small words,
(Doctors say Crouzons babies are sometimes slow developing mentally.)
During her check up and tests, we showed how Sam would repeat words after us, words she knew, they were amazed! The results showed that Sam was above average instead of slow!
Her two main doctors, the brain and plastic surgeons told that at a year old we would have to make some decisions about surgery.
We wanted to go in after her 1st birthday. So when Sam was 13 months old we went in and had a mold of her skull made. The Doctors discussed what they felt needed to be done. They recommended a Six-hour plastic reconstructive surgery,
To reshape Sam’s skull.
They would start by making a zigzag incision from ear to ear across the top of her head. then pull the skin down over the face to expose her skull and forehead. They then disconnect the skull and remove it, place it on a table, break it up into pieces, bend and file the bones to get a more normal shape, and then puzzle it back onto her head with metal plates, chains, and screws. The plates are the size if a match head, but there would be a lot of metalwork done.
Eventually the metal gets absorbed into the bone and she would never feel it there.
This is considered a cosmetic procedure. It’s not a life saving surgery.
Our immediate answer was no. we thought she looked cute the way she was. Besides she is a girl she will have hairdos and maybe she can ware bangs to cover her forehead. (Sam’s forehead was flat) her father and I both said no to the surgery immediately.
We had discussed it all this time, and agreed we would avoid surgery if we could,
Why put her through that pain if we could avoid it?
We went home. Thinking, what a relief! In the first few days after that appointment, my mother and I both thought about it a little more and were both reconsidering,
Having second thoughts but not telling each other.
The thing is after a certain age we would miss the window of opportunity to have the surgery. Because the bones change and set as a baby grows.
Then I sat and thought about it. The way a woman feels about herself and the way she looks is very important. Beginning at age 2-3 when they play dress up in the mirror, all they way to old age.
You’ll always see these little old lady’s with a circle of red or orange lipstick on their lips, and the blue hair piled up to the sky, still trying to feel and look pretty.
How about teenagers, they got nuts about a zit on the nose and will not leave the house until it’s gone.
Then there is also the issue of my first daughter, Sam’s sister Terry, she is a total natural born beauty.
How would Sam feel if more boys call Terry for dates? She would feel it’s because Crouzons makes her look funny.
Woman of all ages are concerned with their looks and struggle with imperfections.
After noticing a few gray hairs last year, I rushed over to the nearest drugstore and bought hair dye to cover my newly discovered three gray hairs,
I get my nails done and try to look my best.
Why then should I be a chicken when it comes to Samantha getting her plastic surgery done, why should I deny Samantha the chance to fix something that may affect her self-image. And have her blame me, and one day say to me why didn’t you fix this when you had the chance!
I had to do this! So I spoke with my mom first, (I was afraid of my husbands reaction) She totally agreed, and was thinking along the same lines as I.
Later that evening, I spoke with my Husband John; he was thinking the same things all along.
We went back to the Doctors to schedule the surgery.
They offered us the option of using plastic dissolving materials instead of metal; it was a new medical breakthrough. If we agreed, Samantha would be the first person in the world to get plastic instead of metal with this type of procedure.
We decided that if we could spare her the metal plates, that it would be great! We consented to it. These plastic plates would hold her bones in place long enough for the bone to fuse and then all of that plastic would melt away.
I was happy about that. The date is set and we were expecting tons of people at the hospital from our churches,
We had discussed this with the doctors and they were very gracious towards us.
The day of the surgery there was a knock at my door at 5 a.m. I open it and in walks this precious woman from church, already praying and speaking in tongues.
She was there to go with us.
Just our parents and close immediate family was like five cars full of people. We have prayed and fasted for one year for this moment and now is the time we have to Trust God to be in there with our baby.
Samantha was given some medication to put her to sleep while I sat holding her.
We didn’t want her wheeled away for surgery awake.
The surgery had started at 9 a.m.
In the waiting room, there was a nurse sitting behind a desk, she had a phone on her desk to give us updates all along the way.
I sat there and tried not to imagine what was happening to my baby, them taking her little skull off; I tried not to think any negative thoughts at all.
The updates came about every hour or so.
Around 2 p.m. was the last call. The next call would be telling us they were finishing up.
But there was no call.
I anxiously waited, after a little over an hour I had the nurse phone in to get an update.
They did not give us any information over the phone.
Moments later, I saw her plastic surgeon come out and walk towards me. I knew from the grim look on his face something went wrong.
He began to explain there were complications, but I dropped down to his feet, fearing the worst, I just became weak.
I gathered my strength and asked what had happened.
The problem they had was with the plastic plates. He continued to explain We had her skull all puzzled back together and on her head, then when we went to pull the skin back over her head everything popped!
There was too much work for the plastic plates to hold together.
Now they would have to start over and use the metal.
Samantha’s surgery lasted double time. Close to twelve hours.
At about 9 p.m. they told us to go to the other floor, and they gave us Sam's room number, she would be there soon.
When all this began I had bought a computer to learn more about Crouzons, I joined an online support group.
One lady had a daughter a little older then Samantha,
She had went through the surgery already,
Her mom was emailing me telling me what to expect,
She even sent pictures of her baby after her surgery, so that I would not be shocked by what Sam would look like.
Her baby’s head had swelled into the size of a pumpkin.
Doctors warned me Samantha had double time in the operating room so she will be very swollen.
We got to the floor they sent us to, by this time, it was just my husband and I. it was about 9 p.m.
All our church friends had gone home.
Our parents were in a waiting room.
When we got out of the elevator, the elevator next to us opened at the same time. Doctors wheeled a bed by us with a baby; I saw the baby and thought Lord Help that baby she looks horrible.
Not knowing it was my Sam.
She looked horrible. Her head swelled and face was so swollen I couldn't recognize her at first, with bandages and all types of machines hooked up to her. As we walked down the hall I noticed we were all headed for the same place then I figured out it was Sam, I choked back the tears, I had to be strong for Sam and John.
The worst part of it was she had this plastic hose coming out of her skull, which they had to put to drain the fluid from her brain. Oh, that fluid smelled terrible.
Nothing can prepare a mother for seeing her baby like that.
The nurse told us Sam would get a shot of morphine every half hour; she was asleep but then woke up crying in pain,
They gave her the first pain shot.
The nurses encouraged me to hold and comfort her, but I was too afraid I might hurt her.
The morphine put her to sleep again.
Exactly a half hour later she woke up again screaming in pain, there was no nurse, we went to the desk only to find, she had been called to another part of the hospital and we just had to wait.
Well John hit the roof!
We were in a panic,
Then I remembered we had brought Sam’s CD player she had a Christian children’s CD with songs like, yes, Jesus loves me,
I turned it on and prayed for her pain and it worked, she stopped crying! Moments later the nurse came in, apologized, and gave her the morphine shot.
Sam was expected to be in the hospital for a week after her surgery.
Once again, thanks to the prayers, she was well enough to be sent home after just four days!
We brought her home, not long after her swelling went down, she had black eyes for a few more days, and then she healed up fast.
She looked wonderful her little head was now a perfect shape.
My Samantha was blessed with thick black wavy hair so you can’t even see her scar.
We continued her check-ups, seeing the Doctors at Children’s,
After a little over 3 years of visits, Doctors gave Samantha a clean bill of health!
And we do not have to go back for any more visits for Crouzons!
The geneticist had taken blood samples from Sam and her father and I when she was 3 months old to confirm that she had Crouzons syndrome, and to see if it runs in our family. After three long years, we get a call to come in for the results. Crouzons is not in either of our bloodlines and the funny thing is the blood test could not find it in Samantha either.
Doctor’s were sure that Samantha had Crouzons syndrome but she does not fit the mold of a Child with Crouzons!
She should have had needed more surgery.
They had expected more complications.
The geneticist wanted to retest Sam to see if this was a brand new mutation never seen before in history! Can you believe that?
I told her Doctor’s, Sam did have Crouzons, but by the power of prayer, she is healed!
My new career in Crouzons ended that day!
Sam was counting to ten in three languages, and she started to learn to read all on her own before her fourth birthday.
She is bilingual besides being smart, she is the sweetest little thing, and she has such a heart for Jesus!
I tell people every chance I get about her Miracle and now she does too!
She started a prayer group for girls her age, and would read the bible to her friends. And after one of her meetings, she came and told me, mom I hope you don’t mind but I gave my bible away. Why I asked? I just bought that for you.
My friend really liked it she says, then she says mom that was a baby bible I want one like yours.
I have the King James Version. That’s what she prefers!
I raised Samantha to love the Lord and to feel confident about herself,
When she was old enough to understand I told her the story of what she had been through,
Then I added, you know Sam you are a very lucky girl she asked why? I replied you had plastic surgery to make yourself even more beautiful, just like the movie stars do.
She got a real kick outta that.
Samantha is just amazing. She prays with all her heart when she hears of sick Children.
I believe she has a calling to pray for the sick. I am sure God has great plans for Sam.
My favorite scripture is
I know the plans that I have for you, declares the LORD. They are plans for peace and not disaster, plans to give you a future filled with hope
As I reflect, I look back and think about the people from both gypsy churches, they would stop by just to check on us and pray. One evening I remember this wonderful Christian couple came over, She started by saying, I know you don’t know me but I heard about your daughter, I am so sorry I couldn’t come sooner to pray with you
It’s been on my heart, see I have six boys’ ages’ one thru six and couldn’t get a baby sitter until now. But I am here to pray with you tonight.
People kept reminding me to Trust God and he would heal Sam.
On more then one occasion strangers I’d meet would tell me Trust God.
One of the first appointments we went to, the doctors told me some things that really scared me and I was just besides myself. Sometimes my mind would just blank out while the Doctors explained to me all the things they were watching for, like for instance
The brain surgeon told me there was a case where the baby’s head got so full of water that it had caused the baby’s eyes to pop out. I was terrified! By these stories so bad that I had to take a tape recorder and record the Doctor visits in case my mind wouldn’t handle the information and go blank,
I guess it was a defense mechanism to blank out; I would wait a few hours after I got home and replay the tape.
As I look back at some of the amazing things God did to reassure me during that first year, I remember just after the appointment when I learned about the baby whose eye had popped out.
We got home. My dad asked me to go with him to the market to get some lunch. He was trying to help me get my mind off what I was told in that one appointment.
I walked right behind him, staring at the ground the whole time while he shopped,
At the check out just before we walked away, the cashier, a complete stranger tells me “you need to trust God”
I nodded and walked away, not feeling so spiritual that day. I became angry, by the time I reached the door of the market, I turned around and went back to the cashier and demanded why would you tell me to Trust God on one of the worse days of my life? His response floored me.
He replied; lady I don’t know why I said that, but I felt like I would explode if I didn’t say that to you. But the thing is I don’t even believe in God.
Well my jaw dropped and all I could do is walk away.
God really knew how to get my attention.
Even now, to this day,
Whenever I see a rainbow, it reminds me of that huge rainbow decal, at the time I thought it was a message hinting the start of a long hard trial in my life. Little did I know that we were headed for a miracle!
My prayer is that our story will inspire and bless people