Trisomy 18 Foundation

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Abigail Rose Shaughnessy


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The Pregnancy

I will never forget the day of my 20 week ultrasound. My husband Matt had to work so I had my mom and my two daughters, who were 2 and 4 at the time, come to the ultrasound with me. The technician seemed unusually quiet during the ultrasound but I did not think anything of it at the time. When she told me that we were having another girl I was ecstatic. She never gave me any indication that anything was wrong. While we waited to see the doctor I called Matt from the waiting room to tell him we were having another girl.

After calling Matt with the initial good news, me, my mom, and our two daughters Shannon and Shelby, went in to talk with the doctor. It was then that the doctor told us what the technician had seen and said that he thought it was possible that she had Trisomy 18 and that it was incompatible with life.

The markers they found were choroid plexus cysts, small gestational size, multiple heart defects, 2 vessel umbilical cord, clenched fists, overlapping fingers, and a possible extra digit.

Matt and I had chosen not to have the AFP test with any of our pregnancies because we felt it was unreliable, so we didn’t have that information to go on. Although even at very early ultrasounds she had been behind in growth, the doctor had not been concerned since it was common that healthy babies measure slightly different than they should according to the dates.

He suggested we get an amnio as soon as possible. I don’t know how I made it back to the car. The girls realized that something was wrong so they did not say a word. On the drive back home I made that awful, second call to Matt to tell him that our daughter may have something called Trisomy 18 and the doctor was recommending that we have an amnio to be sure.


We were very honest with our daughters and family about everything from the beginning. We were careful to try to include Shannon and Shelby as much as we could in the planning and preparation for Abigail’s birth. When we got the call that Abigail did have Trisomy 18 we made the decision to carry her to term. We are Catholic and Catholics do not commend termination but if I had felt that termination was the best thing for us to do I would have done it regardless of my faith. The reason we did not terminate is because we could not choose the day our baby died. We felt we needed to leave it up to God and let him make that decision.


After we found out we did not want people to feel sorry for us. We wanted them to know that we were handling the situation. I typed out this letter and mailed it to our family and friends;

“Matt and I need the support of our family and friends more then ever as we begin this journey in our lives. We do not know what the future holds for us and for our unborn baby girl but we have decided to continue on and see what Gods plans are. We have learned a lot about trisomy 18 in these past few weeks and are always willing to answer any questions you may have.

“The bottom line is that God may well take our baby before she is born. If she is born alive she will have numerous problems, we will find out the specifics of these problems as the pregnancy progresses. She will not be perfect but then again none of us are and we will accept her faults and make her life as comfortable as possible no matter how short that life may be.

“This experience has made us better stronger people and we hope that it will make everyone around us appreciate life just a little more. Thanks again for your continued support and prayers.”


Aside from the T18, I had an uncomplicated pregnancy. We wrote a birth plan and reviewed it with the hospital. In our plan we chose comfort care, because we knew the condition of her heart was fatal on its own and if we did get to see her alive we did not want her hooked up to machines that were only going to prolong the inevitable. We wanted to make sure she was as comfortable as possible for as long as we had her.

The Death, Birth, Memorial and Life After

My due date came and went. The doctor told us that they would induce me when we were ready. I really wanted to go into labor on my own because I felt that if I were induced I would probably be choosing the day our daughter died. But when my due date came and went without any signs of labor I felt that psychologically I could not take the uncertainty any more, and we chose to induce on June 5th, 2 days after my due date. Because I was induced with both my other girls because I was over due I knew that there was a good chance I would have to be induced this time also.

I was scheduled to arrive at the hospital at 5:15 a.m but my water broke at 1:00 a.m. so I went into labor on my own. I am so thankful that my water broke at home only 4 hours before I was scheduled to be induced.

We went to the hospital and I delivered Abigail at 5:47 a.m. She weighed 5 pounds and was 19 inches long. She was breech and her heartbeat was going down with every contraction so they decided not to monitor it anymore. I believe Abigail passed away about 30 minutes before she was born. My labor lasted less than 5 hours. I had an epidural so I was not in any physical pain. I am so thankful that everything happened on its own.


The time we had with Abigail Rose was wonderful. One of the most special things about that time was seeing all three of our girls together. When Shannon and Shelby first came to see Abigail they wanted to hold her, touch her, kiss her and look at her. They did not care that she was not alive. She was their sister and that was all that mattered to them. I am very thankful that we gave them that opportunity to meet and love their sister.

At Abigail’s memorial service I had the priest read the following message:

“We want to thank you all for all of 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. Abigail 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. On her short time here on earth she taught us unconditional love, she showed us courage and strength and finally she showed us how to surrender to the inevitable. Abigail 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, I am very thankful for many things. I am extremely thankful that everything happened on its own and because of that we have absolutely no regrets. I truly believe that God was watching out for us. I am also thankful that at the ‘young?’ age of 34 I know how precious life is. Most people do not learn this life altering lesson until much latter in life. Matt and I no longer take anything for granted; we value life so much more then we did before we were blessed with Abigail.

I am also extremely thankful that I found support from the Trisomy board. I think that is the one reason I still have my sanity. I was able to research and talk to others that are going through and have been through the same thing as me. I found a due date buddy and we talked on the phone regularly. I did not feel alone. I found that no one wanted to talk about my pregnancy and the baby I was carrying and that was all that I wanted to talk about. The board was where I could talk openly with people who understood.

We are a stronger, closer family than we were before we had Abigail. She will always be a positive part of our family.

Abigail was born over 7 years ago and we still talk about her and certainly think about her. Shannon and Shelby still talk about their sister in heaven. We did get pregnant again 5 months after Abigail was born and we had a healthy baby girl. I believe she is a gift from Abigail so we named her Riley Rose after our angel Abigail Rose. Carrying a baby again so soon after loosing one is very difficult but it is worth every second of worry.

When Matt and I first found out that Abigail had Trisomy 18 we were devastated but we chose not to let it destroy us. When tragedy strikes you can let it make you or break you. We vowed that this was not going to destroy us. We tried to find something positive in the experience. I am not saying that those 20 weeks and 2 days carrying Abigail knowing the prognosis was easy; it wasn’t. It was the worst time in our lives and I never want to go through something like this again…but the lessons we learned because of it have changed our lives for the better in so many ways.



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yolanda & quincy stewart.
Fri, Mar 21, 2014
Thanks for sharing, I'm reading pretty much everything I can it really makes you feel good to know your not alone. I was told at 22 weeks our daughter has trisomy 18. It's hitting my husband a lot harder then me. I guess seeing as I am a m.a. and having taking care of our oldest daughter who was born at 28 weeks with,c.p. hearing loss lazy left eye and slow learning I tend to take things one day at a time. They said she wouldn't survive pass six month and she will be 21 this year. But this came completely out of left field. But how every long our Mary Elizabeth lives it will be well enjoyed. Thank you

Mindy Murphy
Mon, Oct 21, 2013
Wow! I have read tons of stories, watched videos and searched for hours and hours looking for some type of encouragement. Your story is uplifting and very close to my heart. My husband and I are 30 weeks pregnant with our third daughter. She was diagnosed at 20 weeks with full T18. She has a large Omphalocele, major heart complications, and her hands are not formed correctly. Her name is Charleigh Rose. God works in amazing ways! We aren't sure what God has in store for our Charleigh girl, but already she has impacted more lives than we could have ever imagined! Thank you for sharing your story!

Marianne Novak
Thu, Sep 27, 2012
I am reading Abigail's story and crying for you all. God bless your angel girl. I am sorry she had to go home to Jesus so soon. I commend you on your strength and courage. GOD BLESS YOU ALL. i am currently 11w5d pregnant with twins, and Baby A has a thick nuchal fold, so i am also concerned about trisomy 18, 13, or 21. Prayers for you all, and prayers for us, if you get this message. my email is mairbear7@yahoo.com as i usually don't check these boards often.

Baby Jakob
Sun, Sep 16, 2012
My 18 year old neice gave birth to a son 9 weeks early. He is 20 days old and they are now saying he has T18 and should be taken off of life support (which is a Cpap for apnea)He has a small cleft in his lip and a hole in his heart. No tests during pregnancy showed the T18 or health problems. The father of the baby was told that when they thought my neice miscarried (at 12 weeks), that it must have been a twin and the twin gave Jakob the extra chromosome. Is this possible? I have been researching it for 2 days on the internet. I hope this is the right place to ask this question! (They are getting a 2nd opinion and will NOT be taking his Cpap but I still want to know if its possible.) thank you!

Kristy fleischmann
Sat, Jul 28, 2012
I just would like to thank you for sharing your story.i have two wonderful daughters and I am pregnant with just as wonderful baby girl who tested positive with t18. This is the hardest thing I ever went thru. I don't believe in abortion, but at the same time I was afraid my baby can be in pain now. I did a lot of research since I was told the news.i was three months when they told me the news while I was looking at my baby moving on the sonogram and I just could stop my baby from trying to come. I saw her moving and the dr talking about how bad her heart was along with a lot of other stuff. But to me she is fighting to survive. With each passing week I still have her heart beating. I know the odds are against us but I need to fight along side her. Reading your story and others helps me know Im not alone and see things a little brighter thank u so much.

Stefanie Bridschge
Tue, Apr 24, 2012
I am 19 years old 17 weeks pregnant and expecting twins. At my first ultrasound where they told me i was expecting twins they also told me baby B had some fluid behind his head and that i should go see a genesists, but acted as if it was nothing. at 13 weeks exactly I saw the genasists. They told me baby A was perfectly healthy but baby B had 6 fingers on each hand, a cleff lip, mangled legs and its right foot was growing to the side. They also told me the baby had a very large hole in its heart and that its stomach tissues were not growing correctly. I was absolutely devistated to hear this. I have been doing lots of research on trisomy 13 and 18 because that it was the genetic counselour had my baby more than likely has. I have my amniocentisis test in a few days. My genetic counselor said even if not diagnosed with one of these disoreders the likely hood of my baby passing bewithin a week after birth was at 80%... though I can't honestly say i have decided to go through with the pregnancy, your story and many of the others i have read have been making me feel much stronger and feel as though I am much more able to do it/ handle going full term. I also have a 9 month old perfectly healthy beautiful daughter!! Your story is so inspiring... I know God will help me make the right choice and i am so glad people like you share your stories which help people like me!!! Although I have told no one but my closest family memebers, I very much support organzions and websites like this!! thank you for your story!!

Kirstin Manholt
Tue, Mar 06, 2012
My son had plexus cysts at his ultra sound too but he did not have Trisomy 18. My heart goes out to you and your family. Please know I am keeping you in my prayers.

MARIE RUNZA
Sun, Jan 29, 2012
READING YOUR STORY REMINDED ME OF THE BIRTH OF MY 29 YR OLD SON JOHN WHO HAS DOWN SYNDROME-NOT KNOWING THAT WE WERE GOING TO HAVE A CHILD BORN WITH DOWN SYNDROME WAS A DEVISTATION TO US AND I CAN ONLY SAY THAT AFTER 30 DAYS OLD HE WAS CONSIDERED TO HAVE FAILURE TO THRIVE AND WAS TAKEN TO THE HOSPITAL ON A LIFE SUPORT SYSTEM.
AT THAT MOMENT IT NO LONGER MATTER TO ME WHAT DISABILITY HE HAD I ONLY WANTED HIM TO LIVE.
GOD'S WILL WAS TO LET THAT HAPPEN AND I CAN'T TELL YOU WHAT A JOY HE HAS BEEN TO US FOR THE PAST 29 YEARS.
PEOPLE WHO MEET HIM ARE TOUCHED BY HIS PERSONALITY AND FRIENDLY ATITUDE. I WOULDN'T HAVE WANTED HIM ANY OTHER WAY.
I KNOW YOU HAVE A HEART ACHE THAT WILL ALWAYS BE WITH YOU BUT THE FACT THAT YOU CHERISH HER BIRTH AND ACCEPT GOD'S WILL WILL MAKE YOU A STRONGER FAMILY.
BTW-WE WERE TOLD 29 YEARS AGO THAT OUR SON WILL PROBABLY NEVER READ, WRITE OR LIVE PAST 16 YEARS OLD-I WISH I COULD FIND THOSE DOCTORS AND NURSES WHO TOLD US IT WOULD BE BEST TO LEAVE HIM IN THE HOSPITAL FOR ADOPTION OR THE STATE TO TAKE HIM-HE WORKS, HAS A GREAT SOCIAL LIFE AND BRINGS JOY TO US EVERYDAY-THEY WERE SOOOOOOOOOOOO WRONG.
OUR ONLY REGRET IS WHEN WE ARE NOT HERE WHAT WILL HAPPEN TO JOHN. BUT GOD WILL TAKE CARE OF HIM AND SO WILL HIS BROTHER WHO IS ONE YEAR YOUNGER-YES ONE YEAR AND TWO WEEKS AFTER WE HAD JOHN WE HAD ANOTHER SON-BORN PERFECT.
GOD BE WITH YOU AND YOUR FAMILY.
MARIE
NY

Kelly B.
Wed, Jan 04, 2012
My husband and I went to my amino appointment yesterday to confirm that our daughter has T18. We will know the results by this Friday. At 18 weeks along AFP came back 1/10 chances she has T18. Ultrasound images show clenched fists, crossed legs, spina bifida, small size, and multiple heart defects. I feel her move maybe once a day. I have a fetal Doppler at home so that helps, I can still hear her heartbeat. I'm 20 weeks now and I decided to carry full term. I can't decide when to let my baby girl die. I am leaving it in Gods hands. I'm so thankful for my family, my 22 month old son Braden and stories like yours that I can get support from.

Darlene <3
Fri, Dec 09, 2011
Thank you so much for sharing your story...at 22 wks we had an ultrasound done and found that our son had plaxus cysts at 24 wks we had an amnino and found out he had T18 and a heart defect. We have 2 healthy girls and we are so excited to have our son. we have had our days of sadness but we are not angry. We know that God wants another Angel by his side to help him watch over all of us. Our faith in the Lord has brought us much closer together and we are building a stronger foundation...Our daughters is what keeps us going and of course our entire family support....I thank you again you and your family will be in our prayers....

Stephanie & Adam Smith
Fri, Nov 25, 2011
Thank you so much for sharing your story. My husband and I found out on 11/21/11 that our baby girl as well has Trisomy 18. There are so many different emotions we are trying to deal with, but with the help of the Lord, our family, church family, friends, and other parents who are facing or have faced the same situation, we know we will get through this. You are so right when you say that Abibail is a gift, not a mistake. We feel the same way! There is a purpose in all this. It has already brought my huband and me much closer. I'm so glad to hear that you have been blessed with another little girl. God bless and thank you again for sharing your story!

Trish Hale
Fri, Oct 07, 2011
Thank you for sharing your story! Your family is very blessed! May God bless you and you family for many years to come. I am sure our faith is what gets us through difficult times.

Natalie
Sat, Jul 23, 2011
Thankyou so much for sharing your story and I'm so sorry you had to go through this. I felt a lot of pride in your story though, proud that you carried on with your pregnancy and proud that you became stronger and learnt those lessons.
I am 28 weeks pregnant with a little boy with T18 - we have named him Sebastian Levi. I too am apprehensive about what lies ahead and pray each day for healing or for at least to meet him alive. I was saddened that your little girl passed away in labour, but then I also felt peace when you said that it was all done naturally and you don't regret it. That's it isn't it - if it was God's will for her to pass before you met her, who are you to argue? This is food for thought for me, as we had thought of perhaps having the c-section if his heart rate drops too much in labour. I guess I will take this one up with God some more, but I thankyou so much for your insight into it for me.
Thankyou for sharing your journey and your strength and for leaving Abigail's footprint on this world.

Nathan...
Tue, Jul 05, 2011
I found out today that I was having a boy and has Trisomy 18. I admire the strength it took you to go through what I am just beginning. Thank you so much for your courage being able to tell your tale.

Peter
Thu, Jun 02, 2011
I am so sorry to hear about your daughter
My wife and I had a baby boy who survived 16 days before he passed away due to trisomy 18

Amy Leigh
Sun, May 15, 2011
Thank you for sharing your story. I am pregnant with my second daughter - Elliana Rain - and the doctor just old us two days ago there is a strong possibility that she has Trisomy 18. She has four symptoms. We are waiting to do the amnio because we don't want to take even a 1/2% chance of going into labor early and losing her. My first daughter Abigail Sage is 18 months and healthy so we were surprised by the ultrasound results. I thank you for your story and although I cry as I type this, I hope we get to meet our daughter and love her the way you did with your Abigail. God bless you for sharing your story. I really appreciate it.
Amy

Mandy
Thu, May 05, 2011
Thank you for sharing your story. My friend is going through the screening process now and was told that her baby was at risk for Trisomy 18. I have been looking for things to prepare her for anything and show her that others have went through this and made it through. I will show her your story so thank you for sharing you are a brave, strong and wonderful mother!

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