Simon’s Story

“…we felt an overwhelming love for our little man. He is perfect and so sweet!”

Simon Crosier, Trisomy 18, 9/7/2010 – 12/3/2010, Webster Groves, MO

Simon(t18) 2_5 mos“Simon receives lots of love and attention from his “special” nurses and doctors. Each feeding and alarm sound, the medical staff attends to. We are very clear that we want Simon and as my husband says, “we are not here to expedite his demise.” We constantly remind them of our wishes and pray that they will see the value of our miracle little man. Simon’s care team encourages us to make memories and enjoy Simon.”

After losing six babies to miscarriage prior to Simon, we were filled with joy and yet terrified of losing another baby. After losing our fourth baby, my doctor advised a karyotype. Results showed that because of my husband’s inversion on the X chromosome, any miscarriages would most likely be a girl. As we know, the XX chromosome results in a girl and XY leads to a baby boy.

We were overjoyed when we discovered we were having a boy. We immediately felt this news alleviated the likelihood of another miscarriage. We wanted to enjoy this pregnancy and joyfully prepare for the arrival of our little boy in September. Our two sons-Samuel, age 7 and Sean, 5 shared in our anticipation.

The ultrasounds did not go as smoothly as we had prayed for. However, we knew that our little boy was God’s gift to us. Then something wonderful happened to relieve our panic. On his way back to work, Scott later told me he felt Jesus’ peace. At that moment, the Holy Spirit revealed to my husband our baby boy’s full name. We decided that day to name him Simon Dominic Crosier-a wonderful, strong name with a Biblical foundation and God’s blessing supporting him.

Because of the markers-cleft lip and clenched fists were seen on ultrasounds, they monitored Simon closely. There were times when the doctors would say we will “treat” him as if there is not a chromosome abnormality. My husband and I did not understand this and for some reason did not question them. We just prayed for Simon to be healthy, but also wanted Simon special needs and all.

On September 7, 2010 at 5:40pm, Simon Dominic Crosier entered this world. We heard his cry and he his skin was a nice color too. My doctor said, “He is small and has the little cleft lip.” That was fine with us. We were simply filled with joy –yet scared. The Neonatologist examined him and said, “He looks good and he’s breathing on his own.” When the nurse practitioner put Simon’s head next to Scott’s and mine, we felt an overwhelming love for our little man. He is perfect and so sweet!

Scott went with Simon and the Neonatologist to the NICU and I went to the recovery room. The emergency C-section was due to Simon’s heart decelerations. Outside Simon’s NICU room was when the doctor told Scott there are some concerns. Scott said, “I know but we have hope.”

The next day an echocardiogram was performed on Simon. Simon has a large hole in his heart, a VSD (ventricular septal defect). He also has a coarctation (a thickening of the heart vessel walls) and a PDA (patent ductus arterious, a persistent opening between two major blood vessels leading from the heart). We were sick to hear this news. Apparently, because of the coarctation it masked the severity of the VSD. Our precious Simon would need surgery for his heart now.

On Simon’s 3rd day of life, we received the news about Simon’s karyotype. We were praying for Simon’s heart and normal test results. Then the Neonatologist comes into Simon’s room to report the findings. There was no beating around the bush. She said, “Simon has full Trisomy 18.” Also, this night was the first time Simon’s alarm went off for apnea.  The doctors said that many infants with Trisomy 18 have this condition that causes interruptions in breathing.

The diagnosis given to us of Trisomy 18 is horrible, but we also knew God was in charge. We also feel so blessed because Simon is an absolute miracle baby. At the same time we were again on an emotional heartbreaking roller coaster. The medical care team encourages us to enjoy every moment, yet be ready for goodbye. We also were not aware of children living with Trisomy 18 and had no idea about SOFT. For right now we enjoy each moment with our sweet boy. We love him so much and have hope that he will stay on earth for a while before going to heaven.

Our prayer Lord is that you give us the maximum time with Simon. We will not lose hope and we continue to celebrate each milestone. Simon loves to play and interact and is always our Master of Ceremony. With his big blue beautiful eyes, he searches deep within others. It is almost as if he is so much wiser than us, and he is an infant.

His big brothers always say the cleft lip makes Simon’s smile bigger. I have to agree, his cleft lip is beautiful. Simon loves my breast milk in a syringe, bottle and nursing. Simon is mainly fed breast milk through an NG tube for his nutrition. Because he has little reserves due to his heart conditions, he is monitored closely.

Simon receives lots of love and attention from his “special” nurses and doctors. Each feeding and alarm sound, the medical staff attends to. We are very clear that we want Simon and as my husband says, “we are not here to expedite his demise.” We constantly remind them of our wishes and pray that they will see the value of our miracle little man. Simon’s care team encourages us to make memories and enjoy Simon. After all, Trisomy 18 is a diagnosis and Simon is a trooper and is surprising us with his tenacity.

Simon’s heart is broken and so is ours. We decided that Simon is too little for the surgery, so we maybe could revisit this option when he gets bigger and stronger. Simon is defying the odds and we still have no idea that other families with a Trisomy 18 child are out there. Since we postponed surgery, Simon is being moved to a larger room in the NICU. Because of being in the hospital, we limited visitors and  created a CaringBridge site for for friends and family to be updated on Simon’s status. Simon has prayer warriors throughout the world.

Simon loves to be held. One of our favorite activities with Simon is called kangarooing. It really relaxes him and he loves to hear our heartbeats. His feedings are going well and it is exciting when the doctor increases the amount of breast milk. Big brothers, Samuel and Sean love to hold Simon, give him baths, sing and read to him. They are so in love with their long awaited little brother.

Simon loves music so much. He will let us know what he wants to hear or if we need to change his CD. His special nurses could read his cues and connect with him in a very gentle way. One of his nurses said, “there is a reason his index finger has a contracture, he hooks us.” This nurse calls Simon her “Prince Charming.”  Whatever we can do to make life enjoyable and entertaining for our “King Simon,” we do. Simon’s favorites are massages, baths, music, breast milk and people. He loves life and teaches us so much each moment.

On December 3, 2010, our son’s saturation levels plummeted and we were told this was it and there was nothing more that could be done. We felt absolutely helpless. At that point I told Simon that it was ok if he wanted to go to Jesus. I know ultimately, God is in charge and we did the best we could for our little man. At 10:45 am, Simon passed peacefully from our arms to our Heavenly Father. The lessons Simon taught us were invaluable.  He clearly demonstrated and taught us unconditional love, compassion, patience and so much more. There is so much more to Simon’s story, but we wanted to share a little something for Trisomy Awareness Month. In March our family has visited St. Simon’s Island, such a peaceful place where we see Simon’s name everywhere!  We stayed at a hotel called, the King and Prince. Scott found this beautiful destination while Simon was living here on earth in his home-Koala Pod in the NICU. Then in July our family attended the SOFT conference in Chicago. It was amazing how we could feel Simon’s spirit and celebrate all of Simon’s trisomy brothers and sisters. Thank you Simon, for being Simon. Keep on showing us your Simon signs, we enjoy the butterflies.  We love you and miss you precious Simon. Until we are all reunited again…..

Love, Daddy, Mommy, Samuel and Sean