Chantal & Moriah by Carrianne - USA

TTTS Parent Stories: Chantal & Moriah by Carrianne

The first time the girls were together since birth.

We were diagnosed with TTTS at 25 weeks as increasing pressure from the excessive fluid in my oversized belly sparked a gall-bladder attack. My GP sent me by air ambulance from our rural town of 100 Mile House, (a six hour drive away), to the Royal Columbian Hospital in New Westminster. Routine ultra-sound the next morning revealed the deadly surprise.

So began our introduction to this lethal disease know as Twin-to-Twin Transfusion Syndrome. My initial Dr. said he'd never seen a case get so bad, as quickly as ours. Overwhelmed by the news, I remember collapsing as I tried to speak with Gary on his cell phone as he was hurriedly traveling through the Fraser Canyon with our children to join me. Without even the strength to hold the handset, the Dr. took it from me and shared with Gary the tragic news that our babies were going to die. From here, I was sent in a screaming ambulance to BC Women's Hospital where, after Gary arrived, we had our first meeting with perinatologist, Dr. Alain Gagnon.

Due to the intensity of our crisis and the unique struggles each of our babies needed prayer for, we wanted to find out the sex of our sick little babies so that we could name them. The new was bittersweet. Our newest blessings after 5 (yes five) boys, were also our first girls. Imagine our grief as we realized that, not only had our little Baby 'A' suffered a tragic Grade IV brain bleed, but also that the excessive fluid that was threatening her life was also greatly compromising the pregnancy and putting our little Baby 'B's life in grave danger as well. We were told that if we did, in fact, loose our very ill little 'hydrops baby', it would be mere seconds before Chantal would be gone as well.

At the time of diagnosis, the only pocket of fluid for our little "stuck twin", Chantal Janae, measured just 1 cm; while the deepest pocket for Moriah was a whopping 17 cm. After being transferred to BC Women's Hospital, Dr. Gagnon gave us our options for treatment. He said he needed to know "what ball we wanted him to run with" and whether we were looking for what he called "one healthy baby, or two live births." We chose the "two live births."

But, if we chose to go to Toronto for laser surgery, it was required that we sign a consent giving permission for the doctors to cauterize the cord of our sicker baby if the procedure, once started, was deemed not to succeed because of the placement of the placenta. We felt that if God so chose to take our babies, then we could accept that as from Him, but we were not about to sign on the dotted line and make it happen ourselves. We opted for serial amnios. ( 1 liter, two days after diagnosis, 2 liters three days later, and another 2 liters two and a half weeks after that.) Finally, after eight weeks at BC Women's Hospital, Dr. Gagnon took off over one gallon of fluid. Unfortunately, Moriah began to experience reverse flow after this final decompression and the girls were delivered by emergency C-section on March 16, 2001. Born at 33 weeks Moriah weighed 4lbs 11oz and Chantal, not far behind, was 4lbs 2oz. Both girls were able to come home just before Easter at one month old.

In the course of my stay, Gary and I came to greatly appreciate Dr. Gagnon and the staff who so compassionately cared for me and our babies. Dr. Gagnon completely supported our decisions and, as our care continued, I believe that we developed a deeply mutual respect for one another. As we spoke honestly with Dr. Gagnon on the night I was admitted what our options for treatment were, as well as the values and convictions that would guide our decisions, he expressed to us that we would be surprised how many parents would opt to terminate the life of the sicker baby rather than to face the risk of having to care for a child that was anything less than what these parents deemed as "normal". As much as I truly understood the dilemma, I was indignant.

"Normal"! What is normal!! And by who's standard!!! This world is full of people with disabilities and deficits. Acquired before or after birth, through illness or disease, or later in life, through injury, there are hundreds of thousands of people around the world who live life with unique and varied challenges. Each one is still created in God's image with the ability to bring glory to the Creator and deserving our highest respect and dignity and affection. With all of the "unknowns", we realized that Dr. Gagnon could make no promises, nor did we expect him to. We resolved ourselves to 'expecting the worst and praying for the best' and hoping against all the statistics that we would come out somewhere in between.

At 25 weeks, when Moriah's bleed was discovered, we didn't have any idea what the outcome would be. We only knew that the bleed occurred on the front right side of her little brain. According to the experts, this will mean that the large motor skills on her left side will be affected. At two and a half years old, we are finding this to be true. Moriah has been diagnosed with left hemi-plegia with her left arm being much more affected than her left leg. On August 31, 2003, at 2yrs, 51/2 months, Moriah took her first steps. Moriah is a brilliant and beautiful little girl who is highly motivated and has an excellent grasp of language. She has a fantastic vocabulary and surprises us everyday with her sentences and questions and her amazing use of humor as well as manners.

Chantal is a very intense and wonderful little person as well. She loves her sister and has been an eager little helper for Moriah. While Moriah has just learned to walk in August, 2003, Chantal has been running since the girls were about 14 months old. Chantal's intuitive nature and amazingly hard working little body has made her a delightfully motivated little person. Chantal's beautiful blue eyes are but a glimpse of the intense little personality behind them.

TTTS has been the single greatest challenge our family has faced. It has stretched us beyond what we ever thought we could bear, and spread us so thin we didn't know how we could have survived but for the grace of God.

Shortly after delivery, Dr. Gagnon confided to us that, had we opted for the laser procedure, we would, in fact have lost our little Moriah girl...Not a day goes by that I do not think of this and thank God for His foreknowledge in our situation and for His guidance as we trod the long and weary path to the brink of death and back again. Every night I tuck in the girls and whisper to each of them, "I'm so glad you're here, I don't know what I would do without you." God is so good.

I would like to share some verses from Scripture that seem to have been written just for our little girls. I discovered these verses in the first week of my turbulent stay in hospital when we were told our babies were not going to make it and while people around the province prayed that God would prove them wrong.......

Truly my soul waiteth upon God: from Him cometh my salvation. He only is my rock and my salvation; He is my defense; I shall not be greatly moved. Psalm 62:1-2

Thou art my hiding place, Thou shalt preserve me from trouble, Thou shalt compass me about with songs of deliverance. Psalm 32:7

For Moriah Grace, our little 'hydrops' Baby A:
(God is my Teacher)

When my heart is overwhelmed,
Lead me to the rock that is higher than I. Psalm 61:2

The Lord is my strength and my shield, my heart trusted in Him, and I am helped. Therefore my heart greatly rejoiceth,
and with my song will I praise Him. Psalm 28:7

For Chantal Janae, our little 'stuck twin', Baby B:
(A Song) (Gift of God)

He brought me forth also unto a large place
He delivered me, because He delighted in me. Psalm 18:19

I called upon the Lord in distress:
the Lord answered me and set me in a large place. Psalm 118:5

I wrote out these verses on some stationary and taped them to my locker in the hospital. They remained there for my entire eight week stay and were transferred to the window behind the girls' incubators in the SCN until they were discharged to come home. May these verses bring as much comfort to any of you as they did for me.