A Word From A Mother's Heart

Posted on Wednesday, August 17, 2011 

I’M NOT SURE WHERE TO START… WELL, SOME OF YOU KNOW THAT ELI & I HAVE NOT ONLY FOUND OUT THAT WE ARE EXPECTING IN OCT, BUT THAT AT 20 WKS OUR UNBORN SON WAS DIAGNOSED WITH A CONDITION CALLED CONGENITAL DIAPHRAGMATIC HERNIA OR CDH. THERE IS NO KNOWN CAUSE & NO KNOWN CURE. 50% OF BABIES WITH THIS CONDITION ALONE WILL SURVIVE. THIS CONDITION IS WHERE THE DIAPHRAGM DOESN’T COMPLETELY FINISH GROWING AND A HOLE IS LEFT ALLOWING ALL THE ORGANS IN OUR LOWER ABDOMEN TO GO THROUGH THE HOLE INTO THE CHEST COMPRESSING THE LUNGS & HEART. BECAUSE OF THIS THE GROWTH OF THE LUNGS IS NOT ALLOWED BECAUSE THE SPLEEN, INTESTINES, AND LIVER ARE WHERE THE LUNGS SHOULD BE AND THIS IN SOME CASES PUSHES THE HEART OVER.

OUR SON SILAS HAS BEEN DIAGNOSED WITH LEFT SIDED CDH. HE HAS BARELY ANY LUNG GROWTH, & HIS HEART IS SHOVED UP AGAINST THE RIGHT CHEST CAVITY WALL. UNFORTUNATELY I WISH I COULD TELL YOU THAT THIS IS ALL SILAS HAS WRONG WITH HIM HOWEVER THE DR’S HAVE FOUND THAT THERE ARE MULTIPLE OTHER ANOMALIES REDUCING HIS SURVIVAL CHANCES. THEY FEEL THAT HE MAY POSSIBLY HAVE A SYNDROME OF SOME SORT BUT CANT REALLY DIAGNOSE THIS BECAUSE I HAVE ALMOST NO AMNIOTIC FLUID IN WITH SILAS. SO THE TESTS THAT THEY NORMALLY RUN CANT BE BECAUSE THE FLUID ACTS AS A CONDUCTOR FOR THE TESTS WITH OUT IT THE QUALITY OF THE TESTS AREN’T WORTH THE TIME & MONEY BECAUSE YOU CANT SEE ANYTHING..

LET ME TELL YOU NEVER DID I THINK THAT THIS COULD HAPPEN TO ME, BUT IT DID & NOT BECAUSE OF ANYTHING I DID OR DIDN’T DO & ALL OF THE CHROMOSOME TESTS HAVE COME BACK COMPLETELY NORMAL! AS A PARENT AND ESPECIALLY AS A MOTHER THIS IS BY FAR THE HARDEST THING I HAVE EVER HAD TO DEAL WITH.. THE MOTHERLY INSTINCT IN ME WANTS TO SAVE MY SON, GET ANSWERS, AND JUST PLAIN FIX HIS BOO-BOOS… BUT, I CANT! I RESEARCH, I HELP RAISE AWARENESS FOR CDH HOPING TO GET ANSWERS FOR MYSELF, AND REQUEST TEST AFTER TEST & MEET WITH ANYONE IN THE MEDICAL FIELD THAT WILL TALK TO ME, BUT I’M AT ONE OF THE BEST CHILDREN’S HOSPITALS IN THE COUNTRY AND THEY ONLY HAVE A LIMITED AMOUNT OF ANSWERS. ON A GOOD NOTE: THEY ARE HOPEFUL HE HASN’T MISCARRIED YET (WE ARE AT WK 30) & THE TESTS ON HIS HEART SHOW THAT ALTHOUGH IT IS ON THE RIGHT SIDE IT APPEARS TO FUNCTION NORMALLY & STRONG!!

I CANT EVEN BEGIN TO EXPLAIN HOW ALL THIS TAKES A TOLL ON THE WHOLE FAMILY, AND HOW MANY FRIENDS & FAMILY MEMBERS I HAVE LOST! WE WERE WARNED BY OTHERS THAT HAVE DEALT WITH CDH, BUT YOU CAN NEVER MENTALLY PREPARE FOR WHEN YOU REACH OUT TO TALK TO SOMEONE AND THEY AVOID YOU BECAUSE THEY DON’T KNOW WHAT TO SAY.. YOU FEEL SAD, LOST, ALONE & LIKE IT’LL NEVER COME TO A HEAD AND BE FIXED.. THIS WILL EVEN TEST THOSE WITH THE STRONGEST FAITH, AS THERE HAVE BEEN DAYS I CRY AND BEG JEHOVAH TO EXPLAIN WHY & FIX SILAS. I LEAN HEAVILY ON MY FAITH, BUT IT HAS DEFINITELY BEEN TESTED! SO I DO WHAT I CAN TO MAKE ME FEEL LIKE I HAVE A PURPOSE FOR MY CHILD AND FOR ME THAT IS RAISE AWARENESS & MONETARY FUNDS TO HELP ENSURE SILAS RECOVERY.. AND IF GOD FORBID JEHOVAH CALLS SILAS HOME TO HIM WE CAN GIVE HIM THE SEND OFF HE DESERVES! IF THAT WAS TO HAPPEN ANY MONEY RAISED THAT IS LEFT OVER AFTER HIS PASSING WILL BE DONATED TO  CHERUBS TO HELP OTHER FAMILIES…

HERE IS WHAT THE DOCTORS KNOW SO FAR ABOUT SILAS:

1. DEXTROCARDIA (HEART ON RIGHT SIDE OF CHEST)
2. LEFT DIAPHRAGMATIC HERNIA. THE LEFT LOBE OF THE LIVER EXTENDS INTO THE LEFT UPPER CHEST.
3. SOLITARY MULTICYSTIC DYSPLASTIC LEFT KIDNEY. DILATED DISTAL LEFT URETER. ABSENT RIGHT KIDNEY. (LEFT KIDNEY IS FIBROUS CYSTS RENDERING IF BARLEY FUNCTIONAL)
4. SMALL CEREBELLUM (2 WK GROWTH DELAY- CONTROLS MOTOR SKILLS)
5. STOMACH NOT SEEN (EITHER NO STOMACH OR ESPHOGIAL ATRESIA)
6. 2-VESSEL UMBILICAL CORD (NORMALLY THERE ARE 3 – 2 ARTERIES & 1 VEINS

7. SEVERE OLIOHYDRAMNIOS (ALMOST NO AMNIOTIC FLUID)
8. BILATERAL CLUBBED FEET
9. BILATERAL RADIAL RAY (NO RADIUS BONES IN FOREARMS).
10. DEVIATED ANUS (NO HOLE FOR BOWEL MOVEMENT)

SO THE REASON FOR THIS EMAIL IS TO HELP US GET THE BALL ROLLING ON A GREAT START TO HIS RECOVERY BEFORE HE ARRIVES:

DONATE , GIVE OUR SON THE GIFT OF LIFE! FEEL FREE TO SHARE TO HELP REACH OUR GOAL!

THANK YOU & GOD BLESS EACH & EVERYONE OF YOU!