R.T.
If you haven't terminated the pregnancy yet, I would highly recommend reading the book "The attonement child" by Francine Rivers.. Even if you have already, I would HIGHLY suggest reading this book. It will help you.
In June my husband and I discovered that I am pregnant with our 3rd child. Although this pregnancy was very much a surprise( I was on the pill) we were wanting more children and excited to be blessed. Within the past few weeks we have discovered that the baby has severe birth defects and a terminal chromosomal defect. As a result she most likely will not make it to term and should she make it would not survive very long and will be in enormous pain. After much horribly painful discussion we have decided to terminate the pregnancy. I am Catholic and this was an incredibly painful difficult decision and do not wish to read comments questioning or condemning our decision.
My question is has anyone had a chromosomal disorder pregnancy and then gotten pregnant again? Was the baby born after the complications healthy? Were you told you were at risk for recurrance of the abnormality? We want more children but would not want another baby to suffer because of our wants.
I wanted to thank everyone who responded. The heartfelt words of condolence were extremely comforting at this time. My husband and I after much discussion with genetics counselors, perinatal specialists and others in the field decided to do an amniocentisis in order to do chromosonal testing. However, when I went in on September 4th for my appointment the prescreen ultrasound showed that our precious little girl had already been called home. We were extremely grateful that God had ended her pain and helped us to not have to make such a difficult decision. We are scheduled for a D&C, because my body has not spontaneously terminated on its own, and are planning to do testing on the placenta once all is done. We are hoping to try again in a year or so, but as I said before if it is not in God's plan for us to have more than we are thrilled, delighted, and more grateful than ever for our two gorgeous daughters.
If you haven't terminated the pregnancy yet, I would highly recommend reading the book "The attonement child" by Francine Rivers.. Even if you have already, I would HIGHLY suggest reading this book. It will help you.
I am the proud grandmother/mother of a 15 year, my daughter had several tests while she was pregnant and all of them came back with a chromosome count that was wrong. They knew she would not be a healthy child. My daughter (her mom) was 16 at the the time and refuse to terminate the preganancy. At the end she had a normal 6 lb baby girl.
Since she was so young I ended up raising her.
My daughter has two other healthy daughters.
J.,
The only way to get answers to those questions is to know exactly what type of chromosome anomaly your child has. If it is something like trisomy 13 or trisomy 18 than the condition is due to an extra chromosome and the chnace to have another child with the same problem is generally quoted as 1% or your age related risk, whichever is higher. Other chromosome anomalies can be caused by different mechanisms and your recurrence risk could be different. The best thing for you would be to ask your Dr for a referral for genetic counseling. We are mastered trained specialists in this are and would be able to give you all the information you would need concerning the cause of the current pregnancy and risks to future pregnancies.
Good luck!
Hi J.,
I just wanted to write as someone who has been there. In 2000, I had a healthy baby boy. In 2001, I found out I was pregnant and was totally expecting another healthy baby. However, something had gone wrong with the baby. The doctors told me that the baby had a chromosomal abnormality and offered me the same information that you were given. To make a long story short, I lost the baby mid-term. It was incredibly painful emotionally. Thankfully, I had friends, family and faith in a loving God to cling to. BUT here is the exciting news for you!!! In 2003, I got pregnant again. I was very closely monitored throughout the pregnancy, which is exactly what I needed for reassurance. I was 36 at the time I gave birth to my second completely healthy son! I was older than you so you do have youth on your side. :-) I have suspicions about what chromosomal disorder my second baby had but I wouldn't let them do testing before she/he died and they couldn't get any "viable" cells to do testing after. So, be encouraged. What happened once doesn't have to happen again. If it helps, educate yourself. Do some genetic counseling into whatever chromosomal abnormality your baby had. Is it reoccurring or just an accident? Know that your future pregnancies will be classified as "high risk" and you will be watched very closely. (That actually brought me comfort.)
God is ultimately in charge. We like to think that we make the babies but that is all His work, His plans, His timing, His creation! That brought me peace as well. God is in charge so I don't have to be.
Sending you a cyber hug,
K.
J.,
I am so sorry that you and your family are having to deal with such issues. You can still have a healthy baby following a chromosonal abnormality pregnancy. Talk with your dr and possibly even talk with a genetisist because each Chromo. abnormality has it's own percentage.
I will lift you up in prayer because I can't imagine having to make such decisions---hugs to you all.
debra
Hi J.,
I am so sorry for your loss. Although this hasn't happened to me, it happened to a very close friend of mine about three years ago. Her baby had Trisomy 18 and did not make it through the birthing process. It was very hard for them but I am happy to say they just had their 2nd healthy and happy baby in June. She was considered high risk for her subsequent pregnancies and had CVS tests done both times to make sure there were no problems. Good luck on your journey.
My brother had the same thing happen. My S-I-L carried it for four month, then miscarried. They waited a few months and tried again, and have a perfect baby boy. These things just happen. The doctor told them that they had no additional risk, but that the older she was, the more likely it would be to happen again, not because she had had the miscarriage, but because of her age at conception.
Please know that we are thinking about you. We all need all the prayers we can get.
My thoughts are with you and your family....
I followed the story of a friend of a friend almost 2 years ago (though it feels like yesterday) who had a similar experience. She chose not to terminate the pregnancy - but her heartfelt blogging about pregnancy, her thoughts, fears and those of her family really moved me. We do not share the same religion - but her writing is compelling and beautiful and the story of loss, hope and now the birth of her third child really touched me.
If you have time to read, her story starts back in June 2007 and continues through the the birth and passing of her daughter in September 2007. It's incredibly moving and hopefully will let you know that you are not alone and that there is hope and happiness in your future.
http://conorbootheandgirls.blogspot.com/2007/07/we-have-j...
I know you asked for advice, but may I give my sympathy and prayers, instead? I am so sorry for what you are going through and for having to make such difficult choices. Remember, God knows what you're going through and He has Understanding for every situation in our lives, especially those which seem darkest to us. May God give you His Peace and Comfort to handle this sorrowful time. I don't have any any advice. All I can offer is my Love and Prayers to our Merciful God that you and your family's hearts will be healed. I thank God for your 12 year old and 15 month old daughters, and for your loving husband and family. I pray that God will show you the blessings of having gone through this, even though we on Earth can't always see them. I know how much you Love and Want this Precious Little Girl and that she will always be in your heart and prayers. I pray that this Little Child's Life and Memory will be able to bless someone else eventually. You may be able to use your experience to help someone else get through a difficult time one day.
In Christ's Precious Name I ask all of this for you. Amen.
I will be praying for you and your family. I did not have a chromosomal defect, but I did have a baby boy with a very unusual fatal birth defect. He had anencephaly. He had a brain stem, that gave us a heart beat for months. His brain did not form. Anencephaly occurs within the first 10 days of pregnancy. I had to also make the decision to terminate or carry full term and deliver a baby that had no chance of making it. I decided to terminate. My delivery was very difficult. I could not have gotten through it without my husband and mom and dad close by. I could feel the prayers of all of my family and friends that day.
After our delivery and some time to grieve, we consulted a genetics counselor. Although, our defect was not genetic. If your chromosome defect is due to not all the cells fitting together and lining up in early development, then you should have the same odds of a healthy baby as everyone else. If they do genetic testing and find that it is due to genetics, then they can tell you the odds of a healthy pregnancy in the future. This is the part of pregnancy that most do not think about. A healthy baby is truly a miracle. In early development, their are so so many crucial biological steps that must fit together to produce a healthy baby. I did have a healthy baby girl a year and a half after loosing our first child. She is now 6. I view her as a miracle on a daily basis. I will continue to pray for you and your family. Feel free to e-mail me if you need someone to talk to. Take care of yourself and allow people to help you during this time. You are loved and love helps heal our pain. Take care.
I am just wanting to say that my heart goes out to you and God Bless you. I know that was a very difficult decision and you made the right decision for you and your family and it is no ones business to comment or tell you anything. I know how difficult that was for you. I did have a friend that this happened to many years ago and she did go on to have other children and I pray this will happen for you and your husband as well. I feel it will as you are strong but remember don't obcsess with getting pregnant and it will happen. Good Luck to you.
I terminated a pregnancy when I was in high school, too young and unwilling to deal with being a mom. It was the smartest decision I ever made and I have never had regrets. Sometimes we make decisions that might be unpopular or not "politically correct"- but they are OUR own decisions- so don't let ANYONE beat you up about this. It is hard enough being pregnant, do what you need to do. That said, I went on to have a healthy son 18 years later,2 years later a miscarriage at about 12 weeks, a year later a healthy daughter and then 2 years later another healthy daughter who was a twin - but the twin miscarried. So - anything can happen. I truly believe you are doing the right thing, better to save everyone the tragedy of your baby being born only to die shortly thereafter- it is hard enough on parents, even harder for kids to understand. And to anyone who asks-you can say the baby wasn't viable and miscarried and beyond that it is none of their business. No need to explain. Good luck and best wishes.
J., I am posting the following message on behalf of one of my dearest friends. My best wishes to you and your family. K.
To mom:
Hello, my name is Tara and I had a similar experience in 2006. Although we were blessed to not have any clue that our daughter was severely ill until she came out, she did end up dying at the age of 5 months 5 days.
My daughter Reese was born after having a healthy boy in 2004. She had complications that involved her lymphatic system. After a long fight in the NICU I decided I really needed to know exactly what was wrong with her. She has been written up in a medical journal as we still cannot find an exact case like herself. Most babies with her condition die once they are out in the real world and most don’t opt for an autopsy as they would call the babies condition hydropic (meaning full of fluid). My daughter had a different mission in her short life. To make a long story short my husband and I also received news that she had Noonan’s syndrome. Chromosomal defect as well….genetic disorder. What knew we wanted more kids but we also knew we should take it a step further and get tested ourselves to make sure we weren’t carriers. After a miserable
3 weeks of waiting for the results they came back negative. It was considered a spontaneous mutation and that the chance of us having another sick baby was the same as any other. My advice to you is to consider genetic testing so you can set your mind at ease. If my husband and were to have found out one of us were carriers, we would have stopped having children. We just couldn’t possibly go through a similar experience.
We have had a healthy boy since then and I am expecting a baby girl in Dec.
I hope this helps. I am saying prayers for you and your family. To me this is the hardest thing that anyone has to go through and my heart goes out to you tremendously.
Thank You,
Tara
My heart hurts for you. I am so sorry you had to make this decision. I pray that God will soothe and heal your soul. My suggestion is to talk to a specialist. There are doctors who can examine you and your husband and tell you the chances of another sick baby. I pray that you will find the answers you need.
I think it depends on the specific syndrome as to the chance that it will reoccur. Some chromosomal disorders are random, others are carry a greater chance of reoccurring. I'm surprised your OB/GYN has not referred you to a genetic counselor who can review the specific birth defect, gather family information from you and your husband, and then advise on the chances for a subsequent child to develop the syndrome (and of course, you could also inquire if there is the % possibility that one or both of your daughters could carry the same birth defect and have their children affected).
I am no medical professional but I would think that your 3rd pregnancy was an isolated case and could have been related to you being on the pill while preg. Best of luck to you guys next time around! For birth control next go round, ask the dr. About the IUD. Better luck than the pill.
I have not had this experience, but I wanted to write to offer my sympathies for you and your family in this incredibly difficult situation. My heart goes out to you, and I don't doubt that this decision-making process was agonizing. I hope that you receive no criticism or judgment here.
First of all, I am so, so very sorry that you have to go through all of this and my heart truly goes out to your family.
Under normal circumstances, any future pregnancies should have the same basic risk factors as any other pregnancy would have. I'm not sure if your doctor has spoken to you more specifically about the type of abnormalities this baby has but if he/she has not commented on there being a herreditary significance, there should be no issues. Depending on what the doctor has said, the recomendation may be there to do a full genetic work-up for you and your husband but being that you already have two healthy children, it may be ruled out. The best you can do is ask and see what the doc says.
I just want to send cyber hugs. I'm so sorry you have to go through this. Prayers to you!
J.,
My condolences to you and your husband. This is a painful decision and a painful time.
I do have a friend who lost a baby due to chromosomal abnormalities and she has two very healthy, smart and cute 7 year olds so it should not recur, especially as you have already got two healthy kids you know it's not genetic but a random happening. I am assuming that you know that the risk rises with age (eg. Down syndrome) and you didn't tell us your age. This is a question for the OB.
K.
I don't have any experience with a pregnancy after a chromosomal disorder pregnancy, but I wanted to tell you that my heart breaks for you and your husband. I know it had to be the most difficult decision of your lives.
I had a special needs child when I was 33 (I'm 60 now), and he has lived a happy, physically healthy life (not at all what your little one faced). We have been so blessed to have him in our lives.
Please accept my sincere sympathy for your loss and know that many prayers are being said for you.
S.
I truly hope you receive no negative comments......my thoughts and prayers are with your family while dealing with this extremely difficult matter.
Wow, I am so sorry to hear about your situation. It really depends on the abnormality. For instance my sister had a condition called Rett syndrome, this syndrome produces many difficult issues in a little girl and is fatal to a boy. If the mother is the carrier then she will have a 50/50 chance of future pregnancies having the same genetic mutation, however if the mother is not a carrier then it is a random issue passed from the father and there is the same risk for anyone that it could happen. When we found out what my sister had, my mother was tested and found not to be a carrier and therefore neither am I. I just cite this to tell you that there are so many variations and depending on your specific situation will determine any future risk. As the others have said talk to you doctor about the risks and what testing you might want to have, and then you will be able to decide if you want to try again. Hang in there I know the Lord will see you through this very difficult time.
Dear J.,
My heart aches for your situation. Though I have never been in your shoes, I'd like to encourage you to think of this baby as a little angel who you are helping return to our heavenly home. You have every right to desire more children. Many people have healthy children after having a sick child. Peace, love and light.
Hi J.,
20 yrs ago I was pregnant with my 2nd child. Things right away 'seemed' not to be right to me. Through the months I felt things were wrong, but all tests turned out ok. At 28 weeks my water broke and we went into the hospital. All kinds of drs 'looked' at the baby, some said he was deformed, others said he was 'ok'. They gave me the option of going on bed rest to get to 32 weeks and deliver. I am a Catholic as well, we were given the terminate or go on decision as well. I know it's a hard decision to make, you have to think of what you and your family will be comfortable with, it is your personal decision. I decided to keep my baby no matter what. Well, 2 days later, he died and I delivered him the following day. He wasn't deformed, or anything. We didn't know anything at the time what was wrong with him. The autopsy showed he had tri-some 13 - 3 #13 chromosomes instead of two, with that, they say, the child is incapable of life. I did wonder if I could have more children and not have to go through that again. Well, I did have 2 more children after that, they are healthy. With my 4th child, they did put me in a high risk pregnancy with him because my tests in the beginning, and again I was given the choice to terminate once again, but the amnio showed all was well and he is now 16 and a great kid.
So in answer to your question, I did have 2 more healthy children after my chromosomal disorder pregnancy. They both are the light of my life, my first child is too. :-) But I was checked more in those last 2 pregancys. I know you had to make a very hard decision, and what you do is your business, I don't condemn you for anything, I know the pain you have to go through making the decision.
Good luck and God Bless
T.
I have no experience with this but i just wanted to say that my thoughts and prayers are with you and your family...I can't even begin to imagine what you and your husband have to go through but your little baby is now in a better place...in Heaven!
Being on the pill when getting pregnant can cause severe birth defects, that have no relation to anything genetic that you might have passed on. It is possible that the chromosomal defect was caused by the pill. If so, then by not being on the pill for awhile before getting pregnant would definitely rule out that possibility of recurrence.
I don't know a lot about chromosomal disorders, but I thought you might find comfort in this blog
where other women share stories like yours:
http://audreycaroline.blogspot.com/2008/01/beginning-of-s...
I have friends at church who had one healthy child, then one with chromosomal defects, and then another totally healthy child, so it is very possible.
My sister had a baby boy w/ a chromosomal defect. They never could pinpoint exactly what he had,but his symptoms were very close to WAGNER's syndrome. He by far outlived all of his expectations, both developmentally and physically, but GOD called him home last year. My sister, was terrified to have another child b/c of the obvious fears, but her second child, a girl, is a healthy as can be.
Hi J.,
I just wanted to say that I'm so terribly sorry for your loss. As a mother of 4 with 1 on the way, I know how much of a blessing children are. As long as you know that this decision is being chosen the way that God wants, that's what's important. Not what others think. I pray blessings on your family. I hope you all stay strong and keep your faith. God can do MIRACULOUS things. God bless you!
I am so sorry that you are having to go through this, and though I do not believe in abortion, I believe that you are doing the right thing.
Yes, you could have another chromosomal disorder pregnancy since it could be something hereditary that is going on. However, chromosomes align differently all the time, so you could have a normal pregnancy, just like the 2 you have already had.
As for experiences, one of my sister's best friends went through something similar to this. Her first pregnancy, the baby had all sorts of problems. They were told if the pregnancy did survive then the baby would not live long after birth, if at all. She and her husband felt they couldn't terminate (their very painful decision). Sure enough, as soon as the umbilical cord was cut, the baby died. She has since had 3 perfectly healthy children.
You have to remember, studies show that about a quarter of all pregnancies terminate themselves within the first trimester because something is wrong with the fetus, either the fetus itself, or the way it has implanted in the uterus. Most of these loses are before the woman even knows that she is pregnant. The birth control pills could have contributed to the problems with this fetus. Or, it could just be the what the chromosomes lined up.
I wouldn't not try to have another child in the future just because this one has been bad. Good luck to you, God bless, and I pray for your speedy healing and recovery from this loss.