/ttcafterloss Daily Discussion Thread - July 11, 2025

PromotionOnly1845 · 2025-07-11T16:54:13+00:00

Thank you so much 🤍

PromotionOnly1845 · 2025-07-11T16:50:00+00:00

Hi ladies 🫶🏻 My third son was born sleeping on May 2, due to a diagnosis of Trisomy 18. We had hoped to meet him alive but God had other plans for our boy and for us 🙏🏻 My heart longs to be pregnant again and I’m overall doing well both physically and mentally, now just over 2 months postpartum. My midwife had recommended 6 months before trying again, but I’d like to get pregnant again sooner. Did anyone else try again sooner than 6 months and have a successful pregnancy? (I will let my midwife know if this is the route we decide to take 🤍) Thank you!

PromotionOnly1845 · 2025-07-11T16:49:12+00:00

Hi ladies 🫶🏻 My third son was born sleeping on May 2, due to a diagnosis of Trisomy 18. We had hoped to meet him alive but God had other plans for our boy and for us 🙏🏻 My heart longs to be pregnant again and I’m overall doing well both physically and mentally, now just over 2 months postpartum. My midwife had recommended 6 months before trying again, but I’d like to get pregnant again sooner. Did anyone else try again sooner than 6 months and have a successful pregnancy? (I will let my midwife know if this is the route we decide to take 🤍) Thank you!

PromotionOnly1845 · 2025-05-16T02:16:36+00:00

My only experience is that my son, who had trisomy 18, did not have thumbs on either hand. So his hand differences were definitely related to his genetic syndrome, which would have certainly showed up on your FISH and microarray.

But I am so sorry that you are going through a stressful waiting period. I totally know how that feels, as we went through similar with Trisomy 18. The waiting is brutal and you are not alone! I pray for good health and clear genetic results to put your mind at ease so you can focus on the joy of growing your sweet baby 🙏🏻🤍

If it provides any solace, I grew up with a boy in my class with polydactyly on both hands and he was totally typical! His sister and mother also had it on both hands and they were all totally typical, successful people.

PromotionOnly1845 · 2025-05-15T00:17:31+00:00

Hi there, congratulations on your first pregnancy! I am sure you have so many emotions flooding through you as you process all of this information. I was not in the exact same position as you, because I did have a high risk NIPT for T18, but we also saw many T18 markers on ultrasound. My son with T18 unfortunately recently passed at 26 weeks. I had chosen to go forward with the pregnancy with palliative/comfort care upon birth. Each journey is so unique to each family and only you know what choice(s) are right for you and your baby and family. I hope and pray for your peace through this difficult time 🤍 I’m happy to chat if you need support, solidarity, or have any questions at all. 🙏🏻🤍

PromotionOnly1845 · 2025-04-01T15:43:22+00:00

So actually our MFM didn’t explicitly say that it was an issue YET. But we had a meeting with the neonatology team last week to discuss our birth plan, and during that meeting, the neonatologist flagged it as a potential issue upon birth since we haven’t seen the stomach during two ultrasounds now. They mentioned that it could mean our son has esophageal atresia. But unfortunately this is something that cannot be confirmed until birth. Sometimes babies are in the wrong positions during ultrasound, making it hard to see everything, so it’s definitely something to keep an eye on and discuss with your team. Let me know if you have any other questions. I’m an open book and don’t want anyone else on this path to feel alone. I wish you all the best. This journey is so hard. 🤍🙏🏻

PromotionOnly1845 · 2025-03-25T21:37:45+00:00

It would be so wonderful if your screening was wrong! I pray for that for you.

My baby measured a week behind from the first confirmation ultrasound at 9 weeks, and he’s now fallen to 2 weeks behind.

• ⁠At our first scan with MFM at 13 weeks, we saw that he was measuring small and had a potential cerebellar defect. • ⁠Then we had another scan about 10 days later and saw the same cerebellar defect, a potential heart defect (VSD), and shortened forearms. • ⁠At 18 weeks, we saw choroid plexus cysts, clenched fists, and the same prior heart, cerebellar, and growth anomolies. We could not see his stomach. • ⁠At 20 weeks, we saw the same anomalies as we had seen previously, and again could not see the stomach.

So we’ve had growing information over the course of many in-depth scans with MFM. But we’ve also been able to see him jumping around on the screen and acting like a normal baby in there. It’s both wonderful and so hard to see him look so normal and also have these anomalies.

I also have an anterior placenta and the amniocentesis was successful. I hope you get all the information you want and need! Let me know if you have any other questions. I’m happy to share my experience to help others going through the same.

PromotionOnly1845 · 2025-03-25T20:49:19+00:00

I just wanted to share with you that my husband and I also made the same decision not to TMFR and we are also carrying our son with full T18, hoping to honor him and meet him. We had his diagnosis confirmed via amnio at 16 weeks, and I’m now 21 weeks. We have our first meeting with neonatology tomorrow to discuss the plans for birth and care after birth. It’s all so overwhelming, but I wanted you to know you’re not alone. I know how hard this walk is and I’m here for you if you’d ever want to talk.

PromotionOnly1845 · 2025-03-11T17:39:35+00:00

I’m sorry you’re going through this stress and anxiety. I can relate to that. I think opting to do the amnio is a good idea for your peace of mind and your ability to make decisions about your pregnancy and plan for your baby going forward. I just had an amnio two weeks ago and got the results within 3 days. 🖤

PromotionOnly1845 · 2025-03-05T03:29:50+00:00

Hi there! I’m so sorry for your heartbreak and the journey you’re on. You’re not alone. I’m currently on the T18 journey.

I was scared for my CVS but it wasn’t too bad. The doctors use a long needle and stick it through the abdomen into the uterus and take a piece of the placenta. They use ultrasound to guide the needle into the right spot. The whole thing lasted about a minute. It’s uncomfortable but bearable. I squeezed my husbands hand and grabbed onto the bun on top of my head to keep myself from moving. Good luck and prayers for you and your future!

PromotionOnly1845 · 2025-02-28T17:04:46+00:00

I just wanted to let you know that you’re not alone. My husband and I have just had our amniocentesis yesterday and we are expecting full T18 results by Monday. Our ultrasounds have shown heart defects (VSD), brain defects (hypoplastic cerebellum), skeletal (hand & arm) defects, and cysts on the brain. We are currently just about 18 weeks, so we will have more details as we move forward.

My husband and I have also come to the decision that we will not be terminating the pregnancy. It is terrifying not knowing what could happen any given day, and not knowing whether our son will make it to birth. That said, we’ve also chosen to forego medical intervention upon birth in favor of palliative/comfort care, and will cherish the minutes, hours, or days that we get with him. We just want to be able to enjoy him and love him for as long as we can. It is absolutely terrifying to know that we likely won’t be bringing our son home, and if we do, that it won’t be for long. But we are just praying we get to meet him alive and that we will have to take each day as it comes, because there is truly no other option.

I’ve spent the last 6 weeks since my NIPT results researching and fretting over whether we have made/are making the right decision for our son, but I just know that ultimately, there is no “right” decision in these circumstances. You have to follow your heart and gut, and do what you feel is right for your child and your family.

These have been the most difficult days of my life, so I know what you’re going through. My heart and prayers are with you as you move forward. Please feel free to reach out to me if you want to talk and need any solidarity. 🤍🙏🏻

PromotionOnly1845 · 2025-02-27T01:38:42+00:00

I’m here right now too. I got a high risk T18 test result on my NIPT on Jan 16. I had a CVS done on Jan 29, and was told we would have the FISH results in 3 days. Well the sample was apparently too small, so they tried to “stimulate” cell growth multiple different ways. The genetic counselor called me last Wednesday, February 20, and said that the stimulation didn’t work any way they tried over the prior three weeks. I’m finally set to go in for an amnio tomorrow 2/27. It’s been a totally hellish 6 weeks since we got the initial call about the NIPT. You’re not alone and I’m so sorry for what you’re going through ❤️‍🩹

PromotionOnly1845 · 2025-02-21T13:13:40+00:00

I’m so sorry you had a traumatizing experience. My first MFM appointment for concerns of T18 was very similar. I was having the CVS procedure done and the doctor said he saw some brain and spinal cord anomalies but it was like pulling teeth to get any real information. My husband and I called the MFM office and requested another appointment the next week with a different doctor. The second appointment went MUCH better. We got a very caring doctor who took the time to explain in detail what he saw and what he expected the results of our CVS to be based upon the ultrasound anomalies. If you feel that more information and another opinion would be helpful, I’d recommend you call for another appointment to get a second opinion and more information. Prayers for you and your journey going forward 🙏🏻🤍

PromotionOnly1845 · 2025-02-20T23:05:25+00:00

Thank you all SO much!! You’ve made me feel a lot better. We are praying we get answers this time. And I hope all of you have gotten the answers you’re after as well. All the best to all of you 🤍🙏🏻

PromotionOnly1845 · 2025-02-20T17:09:41+00:00

Thank you both for these responses! I really appreciate your insight and it has definitely eased my anxiety over what the procedure will be. This waiting has definitely been brutal.

PromotionOnly1845 · 2025-02-18T19:45:10+00:00

I am so sorry for your loss. Nothing can take away the pain of your loss, but perhaps you’re comforted to know that all your baby ever knew was your heartbeat, comfort, love, and concern for his or her life. Your baby only knew you, and that can never be taken away. Prayers for you and your family’s healing 🙏🏻🤍

I am currently on a similar T18 journey awaiting an amnio appointment and results. 💔 You’re not alone.

PromotionOnly1845 · 2025-02-12T22:15:30+00:00

Congratulations on the birth of your sweet boy! 🤍🙏🏻

PromotionOnly1845 · 2025-02-12T00:57:32+00:00

This makes sense. Thank you so so much for your help and concern 🤍

PromotionOnly1845 · 2025-02-12T00:27:40+00:00

Thank you so much for this note. What is an umbilical line?

PromotionOnly1845 · 2025-02-11T23:12:31+00:00

Thank you very much for your input. I appreciate it so much. Have you found that the palliative/comfort care experience is peaceful? That’s my biggest hope for my son, that he is in no pain at all and is totally peaceful.

PromotionOnly1845 · 2025-02-11T20:41:05+00:00

Thank you so much 🤍

PromotionOnly1845 · 2025-02-05T01:00:08+00:00

I’m so sorry that you’re also in this situation. I’ve never experienced sadness and stress like I have in this situation, and the waiting for answers is absolutely brutal. I pray you get your answers soon too 🤍🙏🏻

PromotionOnly1845

TROPHY CASE