We have a huge decision ahead of us that will be a hard one to make. It is just so surreal to wake up one day feeling like you are the luckiest person in the world and then 8 hours later that entire world has been rocked to your very core. We had no thought ever that there would be something wrong with the baby.
Monday during our routine ultrasound we were so hopeful to find out the sex of the baby and to of course see the baby for the first time since our 6 week ultrasound. When we first entered the room at Christ Hospital I immediately blurted to the tech that we WANTED to know the sex just to get that out of the way. I was on the bed stomach proudly out ready to see our baby. The tech first started with the heart and George and I were prepared with our recorder from Build-A-Bear set to record the heartbeat. 161 beats per minute coming in loud and clear through the speaker. George recorded the sound and she continued on with the scan. This is when it started to get scary as the tech was extremely silent and hardly talked to us even if I asked her questions. She seemed completely uncomfortable and her answers were, “you’ll need to wait to talk to the doctor.” Nothing will freak you out more than to see your baby on a screen, not knowing what the hell anything is and having some tech be completely un-helpful for what seemed like a half hour. Literally one half hour she was scanning our baby, not speaking to us and getting more and more uncomfortable which freaked us the fuck out. When I asked her if the baby was a boy or girl she just looked at me sort of shook her head and I’ll never forget the way she said, “I don’t know.” How the hell do you not know? The baby wasn’t moving on the screen just point your damn scanner wand at the crotch and tell us if we are having a boy or girl. Anything would be better than the silence. What made matters worse was that she told me to wipe down and that she would need to get my doctor on the phone and then abruptly left the room. George and I sat there in complete panic, palms sweaty, irritable, anxious, nervous…..replaying what we just saw and heard about our baby over and over again. What seemed like forever and was probably 10 minutes but in panic hospital mode that is forever, we saw the tech rush into the room check our phone in the room and told us that Dr. Caligaris (my OB in Blue Ash) would be calling our room any second.
Dr. Caligaris did in fact call and I answered the phone with George about 2 feet or so standing directly in front of me looking at me with such panic. I tried to take it all in, everything he was telling me and I kept saying, “Okay, ugh-huh, Okay” but fear grew in my eyes and George continued to move towards me with tears streaming down his face. Out of that couple of minute conversation I hung up the phone and remembered this, “the baby has a heard defect – he said it wasn’t good and the baby’s belly was so swollen they couldn’t tell if it was a boy or a girl. We have to come back tomorrow to get a detailed scan and possibly get an amnio” We both grabbed each other and cried. What does that mean? How are we supposed to wait till tomorrow? I couldn’t have felt more helpless. As we were walking out of the room, the office was already closed and the receptionist nervously handed us tissues and told us to come back to the office at 1:20 for our appointment tomorrow. I think I repeated it back to her several times because I wasn’t sure if my body was processing any other information at that point.
Fast forward to the appointment yesterday at 1:20 for our detailed scan. We had another tech basically doing what we thought was the exact same thing as the tech did yesterday and then a doctor came in to talk with us about the baby. My mom was with us to help gather all the information, we thought 3 sets of ears were better than two and hopefully she could help process everything as she has been in a similar situation before. The doctor sat down and started to talk with us about what was going on with our baby. The first news we were given was that the baby had a chromosomal issue and would potentially have down syndrome. I immediately thought, okay please stop here. I can handle this news. Hell, I was welcoming that news and for a second even chuckled as I have told George that I would love to adopt a downs baby. The doctor went on to tell us about down syndrome and how the quality of life varies and it is a wide spectrum and how there was even a downs as an actor on TV. I finished his sentence and referred to the TV character “Corky” then told him that we were well aware of down syndrome and talked about Brian’s girlfriend and our baseball team. But as I was hoping the doctor was finished he continued with the other issues. Not sure of all the medical terms but most if not all the fluid from the amniotic sac is now in the body of the baby in its stomach, around its heart and in a “sac” behind its neck. The news about the sac of fluid around the neck was the second part we were told and was told that if that was the “only” thing wrong, again our chances were not bad but then you add the fact that the fluid is around the heart and in the stomach, kidneys aren’t working properly as well as only having two vessels from the umbilical cord and we have a perfect storm .We were given little to no hope and our 3 choices absolutely suck.
Choices we were given are:
1. Get an amnio to determine the chromosomes of the baby, if the baby were downs then we could potentially be part of a program at Children’s Hospital that would try to work with the baby in utero. If not downs then we would not even qualify for the program. The amnio would not only be poking through the amniotic sac but because the baby is collecting all the fluid in its body they would need to get the fluid from the baby. This would mean a number of things, there is less than 1% chance of survival off the bat. George is going to talk to the doctor today to see if that includes if the baby is downs or if it is another chromosomal number. We also would need to have the baby drained (maybe weekly not completely sure at this point) as well as have me monitored and regular sonograms to monitor the baby. There are potential risks for me if this is the path we choose, I can develop toxemia, pre-clampsia and also mirror syndrome which is what is sounds like, my body would technically mirror what the baby’s body was doing/going through. This is a complicated option and again George is going to be calling our doctor to check a few details as we were in a bit of shock yesterday and want to have all of our facts before we make our final decision.
2. Continue as is. Meaning to continue to be pregnant and allow the baby to pass naturally through the pregnancy. This again would mean that I would have regular check ups and most likely at one of these check ups the baby’s heart will no longer be beating. I will then need to essentially deliver the baby at whatever stage of pregnancy I’m in and that would be in my opinion horrific. I can’t continue with this pregnancy not knowing day to day if the baby I’m carrying is alive or deceased within the womb. Maybe I’m not strong enough, maybe I can’t handle the comments about “How is your pregnancy going” or maybe I just can’t continue to connect with a baby that George and I don’t have a chance to know, to nurture or to play with or any of those experience you “normally” get when you have a baby. Also, this would be a harder delivery for me and will most likely result in a c-section as the fluid would have continued to built up and will most likely enlarge the head and rest of the baby’s body.
3. Terminate the fetus. That was the most clinical phrase we were given yesterday. Not sure how to expand on this option other than to say it would be awful. If this was our decision we would need to have our doctor present our “case” to a board of ethics so that they can approve the termination because of how far along we are in the pregnancy. I don’t think I need to go into the details as you all know what this means… as I take a deep breath I will say that this completely breaks my heart to have to even consider as an option for our baby. Not only would George and I be making one of the most defining decisions in our lives but we would also have to deliver the baby. We would go to the hospital and actually deliver our baby. Typing this is hard, thinking this is terrible, saying it out loud absolutely breaks my heart.
No matter what route we take once the baby is delivered there will be testing that our doctor will want to perform to determine the genetics of the baby. This will hopefully give us a forecast of where we can go from here on our next pregnancy. We were told that this was rare, so rare that my gyno hasn’t seen this for about 10 to 15 years. He did mention that the Dr. at Christ Hospital (where we had our ultrasound) may see more cases but that is only because he sees more patients as it is a hospital. Either way, we were told by both doctors at different times that it is unlikely for this to happen to us again in our next pregnancies. George and I are hopeful with this information but want to find out the genetic results before we move forward with our next pregnancy.
We don’t have to make our decision right this second and will most likely take some time to make sure we are making the right decision for our family. As Dr. Caligaris told us yesterday, we need to be absolutely sure with our decision because we can’t carry the burden of regret. And as George said yesterday, we have to make a very adult decision. As I think back on what my parents endured with Brian, my mom wrestles back the tears and said to me that our decision is far worse as we have no concrete evidence of hope or survival. Mom went with George and I yesterday and she never expected the news and our options to be so bleak.
My dad asked last night, “What is the positive in all this?” At this point George and I can’t really think of one. Yes, we are in our darkest hour and hope that you respect that we just can’t handle phrases right now that are “God has a plan for you.” We aren’t there and between the two of us we will go through all stages of grief. We just need your love and support for whatever we decide to do, please think of us as we go through this journey together. As I told dad last night, if I have to find one positive it is that George and I have had to lean on each other these past 48 hours and will be a stronger couple because of this experience. We both still want children and will not give up on the dream of raising a family.
Last night George’s mom sent him a text message after we were with her for dinner. In the message she said that she supports our decision 100% and has been thinking of the Serenity prayer and typed it out for us to read.
God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Amen.
I will be thinking of this prayer often and hope that you do to as you think of George and I and our whole family.
Monday during our routine ultrasound we were so hopeful to find out the sex of the baby and to of course see the baby for the first time since our 6 week ultrasound. When we first entered the room at Christ Hospital I immediately blurted to the tech that we WANTED to know the sex just to get that out of the way. I was on the bed stomach proudly out ready to see our baby. The tech first started with the heart and George and I were prepared with our recorder from Build-A-Bear set to record the heartbeat. 161 beats per minute coming in loud and clear through the speaker. George recorded the sound and she continued on with the scan. This is when it started to get scary as the tech was extremely silent and hardly talked to us even if I asked her questions. She seemed completely uncomfortable and her answers were, “you’ll need to wait to talk to the doctor.” Nothing will freak you out more than to see your baby on a screen, not knowing what the hell anything is and having some tech be completely un-helpful for what seemed like a half hour. Literally one half hour she was scanning our baby, not speaking to us and getting more and more uncomfortable which freaked us the fuck out. When I asked her if the baby was a boy or girl she just looked at me sort of shook her head and I’ll never forget the way she said, “I don’t know.” How the hell do you not know? The baby wasn’t moving on the screen just point your damn scanner wand at the crotch and tell us if we are having a boy or girl. Anything would be better than the silence. What made matters worse was that she told me to wipe down and that she would need to get my doctor on the phone and then abruptly left the room. George and I sat there in complete panic, palms sweaty, irritable, anxious, nervous…..replaying what we just saw and heard about our baby over and over again. What seemed like forever and was probably 10 minutes but in panic hospital mode that is forever, we saw the tech rush into the room check our phone in the room and told us that Dr. Caligaris (my OB in Blue Ash) would be calling our room any second.
Dr. Caligaris did in fact call and I answered the phone with George about 2 feet or so standing directly in front of me looking at me with such panic. I tried to take it all in, everything he was telling me and I kept saying, “Okay, ugh-huh, Okay” but fear grew in my eyes and George continued to move towards me with tears streaming down his face. Out of that couple of minute conversation I hung up the phone and remembered this, “the baby has a heard defect – he said it wasn’t good and the baby’s belly was so swollen they couldn’t tell if it was a boy or a girl. We have to come back tomorrow to get a detailed scan and possibly get an amnio” We both grabbed each other and cried. What does that mean? How are we supposed to wait till tomorrow? I couldn’t have felt more helpless. As we were walking out of the room, the office was already closed and the receptionist nervously handed us tissues and told us to come back to the office at 1:20 for our appointment tomorrow. I think I repeated it back to her several times because I wasn’t sure if my body was processing any other information at that point.
Fast forward to the appointment yesterday at 1:20 for our detailed scan. We had another tech basically doing what we thought was the exact same thing as the tech did yesterday and then a doctor came in to talk with us about the baby. My mom was with us to help gather all the information, we thought 3 sets of ears were better than two and hopefully she could help process everything as she has been in a similar situation before. The doctor sat down and started to talk with us about what was going on with our baby. The first news we were given was that the baby had a chromosomal issue and would potentially have down syndrome. I immediately thought, okay please stop here. I can handle this news. Hell, I was welcoming that news and for a second even chuckled as I have told George that I would love to adopt a downs baby. The doctor went on to tell us about down syndrome and how the quality of life varies and it is a wide spectrum and how there was even a downs as an actor on TV. I finished his sentence and referred to the TV character “Corky” then told him that we were well aware of down syndrome and talked about Brian’s girlfriend and our baseball team. But as I was hoping the doctor was finished he continued with the other issues. Not sure of all the medical terms but most if not all the fluid from the amniotic sac is now in the body of the baby in its stomach, around its heart and in a “sac” behind its neck. The news about the sac of fluid around the neck was the second part we were told and was told that if that was the “only” thing wrong, again our chances were not bad but then you add the fact that the fluid is around the heart and in the stomach, kidneys aren’t working properly as well as only having two vessels from the umbilical cord and we have a perfect storm .We were given little to no hope and our 3 choices absolutely suck.
Choices we were given are:
1. Get an amnio to determine the chromosomes of the baby, if the baby were downs then we could potentially be part of a program at Children’s Hospital that would try to work with the baby in utero. If not downs then we would not even qualify for the program. The amnio would not only be poking through the amniotic sac but because the baby is collecting all the fluid in its body they would need to get the fluid from the baby. This would mean a number of things, there is less than 1% chance of survival off the bat. George is going to talk to the doctor today to see if that includes if the baby is downs or if it is another chromosomal number. We also would need to have the baby drained (maybe weekly not completely sure at this point) as well as have me monitored and regular sonograms to monitor the baby. There are potential risks for me if this is the path we choose, I can develop toxemia, pre-clampsia and also mirror syndrome which is what is sounds like, my body would technically mirror what the baby’s body was doing/going through. This is a complicated option and again George is going to be calling our doctor to check a few details as we were in a bit of shock yesterday and want to have all of our facts before we make our final decision.
2. Continue as is. Meaning to continue to be pregnant and allow the baby to pass naturally through the pregnancy. This again would mean that I would have regular check ups and most likely at one of these check ups the baby’s heart will no longer be beating. I will then need to essentially deliver the baby at whatever stage of pregnancy I’m in and that would be in my opinion horrific. I can’t continue with this pregnancy not knowing day to day if the baby I’m carrying is alive or deceased within the womb. Maybe I’m not strong enough, maybe I can’t handle the comments about “How is your pregnancy going” or maybe I just can’t continue to connect with a baby that George and I don’t have a chance to know, to nurture or to play with or any of those experience you “normally” get when you have a baby. Also, this would be a harder delivery for me and will most likely result in a c-section as the fluid would have continued to built up and will most likely enlarge the head and rest of the baby’s body.
3. Terminate the fetus. That was the most clinical phrase we were given yesterday. Not sure how to expand on this option other than to say it would be awful. If this was our decision we would need to have our doctor present our “case” to a board of ethics so that they can approve the termination because of how far along we are in the pregnancy. I don’t think I need to go into the details as you all know what this means… as I take a deep breath I will say that this completely breaks my heart to have to even consider as an option for our baby. Not only would George and I be making one of the most defining decisions in our lives but we would also have to deliver the baby. We would go to the hospital and actually deliver our baby. Typing this is hard, thinking this is terrible, saying it out loud absolutely breaks my heart.
No matter what route we take once the baby is delivered there will be testing that our doctor will want to perform to determine the genetics of the baby. This will hopefully give us a forecast of where we can go from here on our next pregnancy. We were told that this was rare, so rare that my gyno hasn’t seen this for about 10 to 15 years. He did mention that the Dr. at Christ Hospital (where we had our ultrasound) may see more cases but that is only because he sees more patients as it is a hospital. Either way, we were told by both doctors at different times that it is unlikely for this to happen to us again in our next pregnancies. George and I are hopeful with this information but want to find out the genetic results before we move forward with our next pregnancy.
We don’t have to make our decision right this second and will most likely take some time to make sure we are making the right decision for our family. As Dr. Caligaris told us yesterday, we need to be absolutely sure with our decision because we can’t carry the burden of regret. And as George said yesterday, we have to make a very adult decision. As I think back on what my parents endured with Brian, my mom wrestles back the tears and said to me that our decision is far worse as we have no concrete evidence of hope or survival. Mom went with George and I yesterday and she never expected the news and our options to be so bleak.
My dad asked last night, “What is the positive in all this?” At this point George and I can’t really think of one. Yes, we are in our darkest hour and hope that you respect that we just can’t handle phrases right now that are “God has a plan for you.” We aren’t there and between the two of us we will go through all stages of grief. We just need your love and support for whatever we decide to do, please think of us as we go through this journey together. As I told dad last night, if I have to find one positive it is that George and I have had to lean on each other these past 48 hours and will be a stronger couple because of this experience. We both still want children and will not give up on the dream of raising a family.
Last night George’s mom sent him a text message after we were with her for dinner. In the message she said that she supports our decision 100% and has been thinking of the Serenity prayer and typed it out for us to read.
God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Amen.
I will be thinking of this prayer often and hope that you do to as you think of George and I and our whole family.
The Herron Nest 
Jesy, thank you for sharing so openly about what’s going on right now. I love you and am having good thoughts for you. There must be a thousand others who feel the same way, too. Hang in there.
I won’t give you any of the God talk, I just want to give you a big internet hug. Hell, I think I may get in my car and drive all the way to Ohio to give you a hug through this. I know this is a horribly hard choice, but I have full faith that you, and your wonderful husband will make the right choice for *YOU* no matter what others, and outsiders may think.
If you need anything at all, please do not hesitate to e-mail me, or call.
Danielle,
Thank you so much for all the virtual hugs and thoughts, you have been amazing. I’ve said this a million times but I’ll say it again, George and I are completely overwhelmed with how many people have reached out to us and especially those we have never met. Thank you again!
Love,
Jesy
The positive is you love that life inside you. However flawed, however poorly, however frightened you are, you love your baby. You love your baby enough to make the right decision. The decision you make does not need to be public, we may never know what you choose, but make the decision out of love and be true to yourselves as parents.
The Serenity prayer…….nothing could say it better than that Jes……I pray for your strength in making this decision and offer my support in any way you need at any time. Lots of heartfelt love to you and George…….Sandy & Bill
Jesy, I am so devistated to hear this news, and I can’t imagine what you must be going through right now. My heart goes out to you and your family in this hard time. My husband and I have friends who went through a very similar situation in their first pregnancy, and had to terminate. I wish you strength in whatever you decide. I know all the options seem a bit crappy.
Your decision will be the right one and only you two can make it.
Love you
Kathy has shared your story with me. I am keeping you all in my thoughts and prayers. I hope you’re able to find the courage and strength that you need.
Thanks Kerri. George and I just saw the posters that the 7th and 8th graders made for Kathy and our family and it was wonderful to read all the messages. Its truly amazing how many prayers have been prayed for Baby Herron. Give Kathy lots of hugs for us when we aren’t around.
Love,
Jesy
Hi Jesy–Please let me know if you got my latest reply. Thanks!
Grandma
Sorry Grandma…didn’t get it! I’ll call you tonight! Love you.
jesy and george,
praying for you daily. thank you for being open and sharing. please know you are not alone. mike and i are here for you both. it gave me great comfort after we lost Laurel,talking and being with other parents who had lost a child or one of their twins like we had. we love you!