Armed with the knowledge that our sweet baby boy would most likely have at least one heart issue, on Friday, August 30th 2013, we went to see another specialist who could perform and interpret a Fetal Echo.
There are not many doctors with the ability to do a fetal echo on a baby in utero! It is a pretty amazing specialty to be able to read an ultrasound so well that you can tell if the heart is developing correctly or not. Especially given that this can only be viewed through an ultrasound, on a heart inside of a uterus, on a heart that is only an inch or so big!
We knew that most Trisomy 18 babies have heart issues. It's on the "list" of common problems. So we went to the doctor's appointment expecting to see a problem. Especially given that a few days prior our ob-gyn thought he saw a concern.
It was the morning of all mornings. Nothing went right, we were running late, and then I realized when we were almost at the hospital, that I forgot my phone. Which would have been ok, except that the doctor's office suite number was in my calendar, on my phone. And I didn't even remember the name of the office. I had no clue where we were going once in the hospital!
Pregnancy brain sets in at the worst times!
So we had to turn around and go home. Which made us late for the appointment. I hate being late for doctor's appointments!
Thankfully they still took us!
It didn't seem right to make small talk with my husband. And the tech was simply looking at the heart in every view she could, there were no cute baby shots. And of course, she couldn't tell us anything. And, again, it seemed odd to make small talk with her. Plus I could tell she was very focused on her job and I wanted her to focus as much as she needed to to get the right photos of my little baby's heart.
So I just laid there, holding my husband's hand trying to see if I could tell anything from the ultrasound photos. But let's be honest, I can barely tell a leg from an arm in an ultrasound photo...I couldn't see a darn thing.
And then the doctor walked in.
He had been viewing the ultrasound as the tech had been performing it. The tech wasn't quite done before the doctor started to talk to us. He was kind, and gentle and took his time with us.
And while I "sort of" understood it in the moment, there was simply too much information! And I knew the instant I left his office I would forget it all.
So I blamed my mom. Yup. I'm in my 30's and I totally blamed my mom! hahaha
I kindly said "Would there be any chance you could write this down for me? I know I won't remember all of this and my mom is going to want to know all of the details. So could you please write this all down for me?"
Mom's are the best aren't they!? She always told me if I was ever in a bad situation, I could blame her if I needed to to get out of there! This was not a bad situation, and it was completely true!! She would want to know ALL the details! And I wouldn't remember them.
But...I also needed it written down for me too.
So the doctor and tech scrambled for a piece of paper and a pen and he began writing it all down. I thanked him and when we left the office and I looked at the piece of paper, I about died!
He hadn't written it down in layman's terms, he had written down the actual, medical terminology! I appreciate the technicalities of it, but I knew I would need to go home and look it all up to fully remember and comprehend what was wrong with my baby's heart.
First and foremost, he has a large hole in between the bottom two chambers of his heart. This is a very common problem among T18 babies. This is something that could potentially be fixed after birth, however they won't typically fix this until the baby is 6 months old. And Trisomy 18 babies usually don't live 6 months. And they have found that T18 babies who have the surgery performed on them right away just generally do not survive. They are usually not able to breath on their own after surgery and their little bodies just can't handle the surgery. So surgery isn't really an option in our case.
Second, one of the valves isn't closing properly when blood is pumping through so the blood is leaking back into the chamber and not circulating correctly.
Third, one of the valves and ventricles are substantially smaller then they should be.
There is simply nothing they can do.
They will typically give the babies oxygen and medicine to help. But there is just not anything else that can be done.
The original heart problem my ob-gyn thought he saw was not an issue at all though! (And the specialist explained why it could have looked that way though.) So that is great! And, if all other conditions are ideal, these babies can live for a few weeks with these heart problems. So we might have time with him!
So even though we received bad news, and he has three heart problems, the news could have been worse. And for that we are grateful!!
After that appointment, the genetic counselor from Maternal Fetal Medicine wanted to meet with us again, so we headed down a floor and into the MFM's office.
She wanted to go over the results of the amnio and also the fetal echo we had just had.
We learned the following information:
- He is definitely a boy! (gotta love definite amnio results!)
- 35-60% of T18 babies who are diagnosed in the second trimester do not make it full term
- Most babies "official" cause of death is apnea (but they don't really look into it much)
- He has full Trisomy 18, which is the most common and the most severe.
- It is in no way hereditary. Scientifically speaking this was a completely random occurrence.
- Our chances of having another T18 baby are less then .5% (so negligible really)
- There is earlier testing available to us if / when we decide to have another baby.
The appointment went well. Mostly we just reviewed our final amniocentesis results and they made sure we had no further questions.
At 28 weeks they want to see me back in the office for a follow up ultrasound. At that time I will also head over to the NICU to meet with a neonatologist to discuss what to possibly expect after birth and what some of our options may be. Also, to discuss our preferences with regards to continued care for our baby (ie what if any heroic or comfort care measures we would want to be taken.)
But for now I am looking at the bright side! I have 3 weeks without doctor appointments! And since I've practically lived in the hospital for the last month, I am super excited to have 3 whole weeks off!!
It's the little things...right!?
Here are all the posts in this series about our family's journey:
DIY On the Cheap
Thinking of you Ashley and praying for your family. You are handling this amazingly well and I know that God has many blessings in store for you and your family! Your strong faith is so admirable and I know that there is a purpose for all of this. It's hard to understand why certain things happen in life, but I know there are reasons beyond our understanding. Hugs to you!<br /><br />-Erin @
Ashley Phipps
Thank you so much for your kind words and for your prayers Erin! They mean so much to us!!!
Patty Hibble
xoxo
Ashley Phipps
Thanks Patty!
Abbey Ofs
Thinking of you and your family, Ashley. You have such a wonderful spirit and your little boy is lucky to have you.
Ashley Phipps
Thank you SO much Abbey! You are so kind 🙂
Marie
Is in utero surgey not an option for his heart? http://en.wikipedia.org/wiki/Fetal_surgery Continuing to pray for you all!
Ashley Phipps
Marie,<br /><br />No...not really. Even if they were able to fix his heart, Trisomy 18 babies still don't live very long. It is just one of many issues these babies are facing. 🙁 Thank you so much for thinking of us though and for the prayers! They are greatly appreciated!
Karin
Sending you love and hugs!!! Enjoy your three weeks free of appointments! 🙂 Thank you for being brave enough to share your story. You are amazing!
Ashley Phipps
Thank you so much Karin! You are so sweet. 🙂
Angie Holden
Ashley,<br /><br />I had only read part of your series up until today. I had no idea it was this serious. Hugs for you dear. Need anything at all? Please let me know!! 🙂
Ashley Phipps
Thank you so much for your kind words Angie! You are so sweet. I appreciate it!
Lisa
sending love your way. You are being so strong through all this. I hope you get some time to spend with your precious little guy
Ashley Phipps
Thank you Lisa! We hope so too 🙂
Magali@TheLittleWhiteHouse
I still admire how brave you are to go through this and how much love this little boy receives.
Ashley Phipps
Oh thank you so much! And thanks for your kind words.
Amy
Praying for the blessing of time spent with your son, and for his heart, and yours.
Ashley Phipps
Thank you so much Amy! That is what we are hoping and praying for right now too! Just a little bit of time. 🙂 Thank you so much for your prayers! They mean so much to us!
Diana Miller
I wish I could just give you a giant hug. XOXO
Ashley Phipps
Diana I wish so too!! 🙂 One day when I get to see you in person I will hold you to that hug :):)
Charlotte Smith
As always, your strength and optimism amaze me. Your ability to tell this story with such love and light is extraordinary. xxoo Charlotte
Ashley Phipps
Oh thank you so much Charlotte...you are so kind. I truly appreciate your sweet words! Thank you!
treegrl
Thanks for sharing your experience, as well as your great faith in Heavenly Father Ashley. Love to you and your family.<br />
Ashley Phipps
Thank you so much!
Amy Weston
You are continually in my prayers. We all hope for the best and case scenario and that you and yours will comforted throughout this. :)<br />Love Amy
Ashley Phipps
Thank you so much Amy!! We really appreciate your prayers and for your kind words! Thank you!
Melissa@TheHappierHomemaker
I'll continue to pray Ashley, thank you for sharing your journey.
Ashley Phipps
Thank you so much for your prayers Melissa! They mean so much to us!
Stacy
I have been reading all of these post and crying as I read them. AS a mother to three children, my heart breaks for you each time. I can feel physical pain because I know that had I been given this diagnosis while pregnant with one of my children, my world would have stopped. God is so much greater than we are though and after the initial pain and shock, He starts our worlds spinning again. You
Ashley Phipps
Stacy,<br /><br />Thank you so much for your kind and heartfelt words! You are so so sweet. And thank you so much for your prayers. I truly appreciate it!<br /><br />Ashley
Laura
Praying for you and thinking of you and your family, Ashley.
Ashley Phipps
Thank you so much Laura!
Brooke
I was led here through Pinterest because of the wonderful quotes you've posted and I just had to read your whole story. I have two very close friends and a sister in law who have all had Trisomy 18 babies. Two of those babies lived only a few hours, one of them actually got to go home with the family and passed away in her mother's arms when she was 3 days old. My heart just aches for
Ashley Phipps
Brooke,<br />Thank you so much for stopping by and for taking the time to read my story! And thank you for sharing your story as well! Losing a baby is always so hard. I truly appreciate your kind thoughts and prayers! They mean so much to us!<br />Ashley
Angel
I am 19 weeks, today, with my first child. A sweet little girl. We found out about 5 weeks ago, that our little girl is high risk for Trisomy 18. It's been a whirlwind of appointments and doctors.. we haven't decided if we're comfortable with the amneostesis. Yesterday we had another ultrasound. The doctor pointed out the following factors: she has clenched fists with overlayimg fingers, her stomach is abnormally small, her feet are arced upward, her cranium appears to be too big, and there is a hole in her heart...
......How did you find the courage to do the amneostesis?
Ashley Phipps
I am so sorry to hear that you are walking this path. Please know that you are not alone, and I will be keeping you in my prayers.
We were given 1 in 2 odds from the bloodwork that our little one was a Trisomy 18 baby, and with the ultrasound, and the factors we saw there, we really were quite sure he had Trisomy 18. It sounds really similar to where you are at.
I want to first say, that you need to do you, and you need to follow your gut! Whatever makes you most comfortable is what you should do. I won't try to convince you to do it or not, but I am happy to share a few thoughts I had about it all.
I could have easily choosen not to do the amneo and it would have been fine. I did not have to, it was pretty clear he had trisomy 18, it was definitely a choice for us. And we were choosing to continue the pregnancy no matter what, so we didn't need it. But there is a part of me that just wanted to be as sure as we could possibly be. And at that point, we weren't super concerned about the risks that can go along with an amneo because we were facing Trisomy 18, which was an even bigger risk.
We were able to find out from it that it was not hereditary and that it was a full trisomy 18. Sometimes with partial trisomy 18 they can live for a few years, sometimes. And we wanted to know if it was hereditary or not in case we choose to have more children. That information was important to us, so again, it helped steer us towards getting it.
Like I said, it was a choice we made, and we did it because I was comfortable with the risk vs information aspect of it all. I have never had an amneo with any other baby, and would only choose to do so if there was a real reason. I felt this warranted it, but not all women do, and that is totally fine! That was just my personal feelings about it.
I will tell you though, it wasn't nearly as painful as I was expecting it to be. I had heard stories that it hurt, but it honestly wasn't too bad, just, don't look!
Again, I am so sorry that you are going through this, and I hope and pray that you will be uplifted during this time and that you have a great support system during this time.
Lots of love,
Ashley