Having lost our first pregnancy to a miscarriage, we were very nervous about this pregnancy. But after seeing our baby’s heartbeat at a 6wk ultrasound, having made it pass the week we miscarried before, having made it past the first trimester, then to our ultrasound at 19wks, we were somewhat relieved. We counted down the days to find out if our baby was a boy or girl. The ultrasound seemed to be going well. We saw that he was a little boy and tears overflowed from my eyes. Because of the baby’s position, the technician had a difficult time looking at our baby’s heart. So when she was finished, she said she was sending in the doctor to get “a better look”. Still, we didn’t suspect anything. After the doctor had finished looking, he set down the wand and said, “We need to talk about a few things”.
The markers they found were a choroid plexus cyst, a large neck roll at the base of the head, short femur bones, a calcium deposit in the heart, and a small left ventricle in the heart. After explaining his findings, the doctor told us that although the majority of those markers could turn out normal, he suspected that our son could have one of three things: Hypoplastic Left Heart, Trisomy 21, or Trisomy 18. Being a Neonatal Intensive Care nurse myself, I knew these conditions well and burst into tears. My husband Dennis didn’t understand. After an explanation, the doctor performed an amnio. An agonizing week later, the genetic tests revealed our son had Trisomy 18.
I feel blessed to have been at a hospital where they would not allow us to induce labor and therefore terminate the pregnancy. It encouraged us to remember that every life is sacred regardless of how long it is. God had trusted us with this child and it was His decision to decide how long our son would be with us.
The next four months we tried to enjoy the time we had with him as much as possible. I took time off of work to take care of my body and fully enjoy the experience. We were surrounded by incredible family and friends. My co-workers gave me a “Mommy Shower” where the gifts focused on things my husband and I would enjoy, as well as keepsakes. One thing we bought ourselves was a Fetal Heart Rate Doppler. This way I was able to check his heart rate and listen to it anytime I wanted. It was music to my ears. We recorded his heartbeat on a little box that we bought at Build-A-Bear and placed it inside a bear we had chosen. It is a precious keepsake we will have forever.
The Birth of Our Son
On March 13, 2007, at 35 weeks, I went into preterm labor. It was a long, sleepless night of listening to his heartbeat on the monitor. We were told that labor can be very stressful on babies with Trisomy 18 and a heart defect such as his. He held in strong. When my doctor arrived in the morning we decided to break my water. Shortly after, my contractions picked up and then slowed again. To get things going again, they started giving me pitocin. From there on, things seemed like a whirlwind. As my labor progressed and my contractions got stronger, Riley’s heartbeat slowed. We had made a Birth Plan and explained that we wanted to know our son’s condition at all times. Our wonderfully supportive nurse, Jessica, calmly let us know that Riley’s heart was not handling the stress of labor. We had a choice: Slow things down only to try the same things later with the likely same result, or continue and try to progress labor to get him out quickly. We chose to continue on. Soon after, we listened as our son’s heartbeat slowed and faded to an occasional beat. At 2:55pm, after 27 hours of labor Riley passed away. He was born a couple hours later at 5:39pm.
We spent the next several days with our son. He stayed with us in our room and we soaked up every minute to hold him. We had previously contacted a wonderful photographer, Brandy, from http://www.nilmdts.com. She attended my delivery and captured the precious moments we had free of charge. I would encourage any family to at least look into this option. The professional pictures we have are such a treasure. I was also able to "find some good" in the situation by pumping and donating my milk to the mother’s milk bank. Knowing that I could help improve the lives of premature babies with my milk soothed my soul. You can find a bank near you by going to http://www.nationalmilkbank.org
Life After Loss
It has been almost 3 years now since we lost our son. We still miss him deeply, but I can tell you that the healing process is taking place. With lots of prayer God has allowed me to see a few of the reasons for Riley's life. After finding out about Riley's diagnosis it was too difficult for me to work as a NICU nurse, so I took time off to stay at home. Nearly 3 years later, I have healed enough to realize that God has granted me a special perspective and that I need to use my experience to love and care for the families in the NICU. So I have returned to work as a NICU nurse. And although I had to go through what was the most difficult time in my life, the experience of working through depression has empowered me to help others. We are proud to say that Riley is a big brother. Ty Allan Black made his appearance in March 2008. The boys actually share the same birthday, March 14th. Since I had to schedule my C-section, we thought it would be neat for them to have the same birthdate. This way the day will be a celebration and not a day of sadness. We plan to have a cupcake with a candle just for Riley each year at Ty's birthday party. And we are proud to announce that God has blessed us with another healthy son who will arrive in April 2010. Having more children does not take away the pain or replace our loss. But it has given me hope and a reason to continue on.
If you would like, you can add your name and a short message to our Guest Book. Thank you.
I have a heavy heart this day. Our Amy passed away last week suddenly from a blood clot. We are comforted to know that she is now reunited with Riley but the pain is very real.She was always reaching out to others who were hurting and we know she reached out to many of you as well.We know that she would want us to be strong and not grieve for too long so that is what we will try to do. Please keep her husband Dennis in your prayers as he will be raising two little boys and trying to make sense of this himself. We grieve at the loss many of you have suffered but did not fully understand until God called Amy home. God bless you. Tom.
Last week my husband & I found out our son has choroid plexus cysts, clenched hands, a defect in one of his kidneys and defects in his knees the specialist said that he most likely has Trisomy 18 and that because of his kidney he might not survive we are waiting for the amniocentesis results this has completely rocked our world we already have a son & that pregnancy was perfect even the delivery was perfect & now we get this. There are no words to explain the pain we feel knowing that we might lose our son but this is what God chose for us & God will give us the strength we need to keep going. We're going to name our son Angel cause that what he is an angel.
Tue, Nov 08, 2011
Thank you so much for sharing your experience with us. My daughter is going throught he same thing. She is also a nurse and this is her 2nd pregnancy, first one she loss. This has giving her hope and I thank you for that.
Fri, Sep 10, 2010
We discovered almost 6 weeks ago that our daughter has a severe congenital heart defect. A further scan this week also reveals other features - choroid plexus cyst, hands in fists, small lower jaw - which all indicate a likelihood of Edward's syndrome.
For personal reasons, we've declined having an amnio at this stage.
The grief of having to carry a child who might or might not survive, is unbearable at times.
Reading what you wrote, has helped. Thank you so much.
Thu, Feb 04, 2010
I sit here reading with tears of joy for you! God found you and blessed you with Riley! He knew you needed him as much as he needed you. You showed him unconditional love. You could have went with the path of least resistance and threw in the towel. But no! You embraced what path God had put before you. You walked it with you head high and with him by your side every step of the way. No it was not easy for you but you held your head high and let the blessing the God sent you change your life. You and Dennis gave him a love and life. He will always live on in our hearts and will always bless us with his memory.
God Bless you Honey!! I love you!
Stacy Ruhana Kappes
Fri, Mar 07, 2008
Amy and Dennis
I am sorry for everything that you guys went through and are still going through. I am sure you have been through a roller coaster of emotions, but I know you two are strong and have tremendous faith. When I heard about your story I couldn't get you two out of my mind. I have kept you in my prayers. I hope you know how many people love you and care about you. God Bless you and your family
Stacy Kappes firstname.lastname@example.org
Tue, Jan 22, 2008
Amy, you told this so well. Jamie and I pray for you guys' all the time, and now that you have baby Ty on the way, we are so thankful that God has blessed you again. We love you and Dennis so much and we are so thankful that God has given us a opportunity to know you so well. Thanks for letting us be apart of your lives, and thanks for teaching us patience without understanding. You truly are a person that someone can learn so much from, and I am glad that you are so open to tell Riley's story. We love Riley and he will live in our hearts forever.
Thu, Dec 13, 2007
I am so sorry for your loss. To have to hear your unborn childs heartbeat fade away to nothing must have been so awful. My hope is that you continue in your healing process. Your precious Riley was absolutely beautiful. Your family will be in my prayers. If you need a friend, feel free to contact me.
Mommy to twin angels Abigail Marie and Emily Elizabeth email@example.com
Mon, Aug 27, 2007
myself and my husband are sorry for your loss, as well we had a loss from trisomy 18 in november a littly boy we called alby. it is hard but things like this web site help more than words can say. we are now having a little girl due in november this pregnacy has been soo hard. but we keep our heads up and remember our son always and forever. and we hope you are trying to do the same as your baby riley will always be in your heart mind and soul.
Tue, Aug 07, 2007
Thank you so much for sharing this with me. When I was preg. with Ethan my husband told me there was a reason why God pick us to be his parents. I can see why God picked you to be Riley's mom! You are so full love and faith.
Tue, Jun 19, 2007
Im glad to hear that you chose to spend time with your son. as hard as it is to let go that is something you will treasure forever. my little girl, Gracelyn Ciana, was diagnosed at 25 weeks. i cherished every kick and hiccup from her as she was so active. she was born at 39 weeks on Apr 3, 07 at 2.29am, and we had her put on a ventilator so the family and her big sister Zoe, would be able to hold her and love her. We removed the tubes at 1pm and she cried her sweet little cries and stayed with us until she passed at 8pm. it was very peaceful and she was perfect.
Mon, Jun 18, 2007
i know what your going through i also lost my baby angel nathalie garcia i didn't know she had T18 until she was born, i had ultrasounds done through my whole pregnancy and never did my doctor told me that there was a problem with my baby she was born through c-section because of lack movement so they had to performed quickly she was born on march 22, 2007 and got her wings on march 29, 2007, i was so sad and still i'm especially if i see pictures of her . we decided to cremete her so i have her ashes at home she always has a flower so she know that we love her , i didn't even had the chance to tell her that we love her, my heart goes out to you and you and your baby boy will me in my prayers,we are think of trying for another pregnancy but i'm scare to go through the pain of losing another child , i hope everything goes ok just have faith in god and everything will go ok!!!!!!!!!1
Sat, Jun 16, 2007
My heart goes out to you - as I know exactly where you are coming from as our beautiful little girl, Ashlee Rose gained her angel wings at birth 01/06/07. We found out at 34 weeks that our baby had T18 - and were devastaed! We have a gorgeous 12 year old daughter and had been trying since she was 9 months old for another child!
At Ashlee's funeral service last week, below is what we said to our family and friends:
"We want to thank you all for your continued support through this ongoing journey in our lives. We conceived and gave birth to an angel and feel very privileged to have had such an enlightening experience. Ashlee Rose is now and has always been God's child. She was only placed in our arms a short time to teach us all the lessons of a lifetime. She taught us unconditional love, she showed us courage and strength and finally she showed us how to surrender to the inevitable. Ashlee was not a mistake by God; rather she was a gift from him. A gift that we can all celebrate. A gift that we should all cherish.
Through this experience, we are very thankful for many things, and have absolutely no regrets. Before Ashlee was born, we knew our time with her would be limited and we value life even more than we did before we were blessed with Ashlee.
John, Deanne & Courtney"
Although the pain of losing a child is terrible, the entire experience has been amazing! We don't want to dwell on the sadness - we want to embrace the joy of the time that we were able to spend with Ashlee - the memories of an angel that was needed elsewhere..... Deanne.
anne marie lillwitz
Fri, Jun 15, 2007
Oue baby, kelly, was born one week ago today (june 8th). We found out at 32 weeks that she had T-18. It was a very stressful 2 months, not knowing if she would survive childbirth. SHe, too, did not handle the stress of childbirth and was still born. We had a wonderful afternoon, taking pictures, baptizing her, and letting our other kids hold her. We know this is GOd's plan for Kelly and for us. It is comforting to know that others are called to this path of loving a child who is an angel and are somehow given the grace and strenth to handle it. anne marie lillwitz
Leonard & Teresa Smith
Fri, Jun 15, 2007
I to am a mother of a baby with T-18.
We chose the same steps to have our little Grace Elivia, We know the pain you all feel everyday. Our little Grace would of been 1yr old on 6-29-2007, she went to be with Jesus on 7-1-2006. Your little Riley is beautiful, now our 2 little ones are together in heavan..Thank you so much for a wonderful story.You will always be in my thoughts as a parent with a child born with T-18, we will always be togther..God Bless your family..
With great love,
Teresa & Leonard Smith
Fri, Jun 15, 2007
Thank you so much for sharing your story. I find it comforting to know that someone out there has just experienced what I'm going through. I'm 26 weeks now and we also decided to keep baby Angela to full term. Im just so thankful to GOD that my baby is still alive inside of me. My doctor said that my baby has a 50-50 chances of being born alive and I can't tell you how that scares me. I can only hope and pray that when that time comes and my baby girl is gone, that my husband and I will be as strong and together as you and your husband.
Fri, Jun 15, 2007
I wanted to say that I am truely thankful for your strength to share your story. As I read your story I could not keep the tear's from flowing! We recently had a scare of Trisomy 18 but the level 11 ultra sound showed no sign's of tri 18 so we decided at this time not to have the amnio done. Of course without the amnio we can't rule out 100% that she has no form of down syndrome but we our happy with our decision right now, We know that it is God's decision in the end how long we have our child and we will cherish every sec. just like with all of our childern!! God Bless you!!
Fri, Jun 15, 2007
What a beautiful story...
Thank you for sharing.
My tears flow as I relate to your experience. My heart aches for you...and at the same time, I feel so blessed to relate to the profound sense of FAITH AND LOVE you experienced that encompasses our entire journeys. The aches of loss are are wrapped inside the gift of love that we received on the path of pregnancy and in meeting our little ones for the first time. May your loss continue to be soothed by your love, faith, memories and connection to your little angel.
Thank you so very much for sharing!
I wish you peace and love through the tough times.
Lots of love,
Kristin O'Rourke Salamanca
Mommy of MarySol Harvest Salamanca
Born to Heaven- March 6, 2007
Wed, May 30, 2007
You do not know me but your story touched me deeply. My daughter was recently stillborn with Trisomy 18. I most appreciated your paragraph: "I feel blessed to have been at a hospital where they would not allow us to induce labor and therefore terminate the pregnancy. It encouraged us to remember that every life is sacred regardless of how long it is. God had trusted us with this child and it was His decision to decide how long our son would be with us." THis is exactly how we felt with both of our babies, diagnosed at 20 weeks with a serious condition. THey have both now passed, my daughter just 2 weeks ago of Trisomy 18, but we appreciate every minute we had with each of them. Thanks for sharing your eloquent words.
Disclaimer: The content of this page does not reflect the views of the Trisomy 18 Foundation. The Trisomy 18 Foundation offers this space to parents as part of the Support Program. Parents have control over how they tell their child's story as well as which pictures they feel comfortable sharing with the Community.