Sensitive issue... future death of baby.

stapes · 05-04-2008, 01:54 AM

I'm having a hard time finding my "place" here on SC again. Not TTC, pregnant with a baby who will likely die, but haven't lost him yet. Is there anyone who has continued a pregnancy knowing that they would not bring thier baby home?

My baby has Full Trisomy 13 and will likely die if he is even born alive. I am far enough along that I will go through labor no matter what. His "abnormalities" are extensive and I'm starting to get very nervous and scared of labor, birth, and death. This is our first baby and I have never given birth before, so that alone is scary and then to know that he will not live long, if he even makes it through labor, makes it very hard too.

I'm just needing a place to express my fears and concerns and grief over all of this. I'm sorry if this is not the place.

lisattcbaby · 05-04-2008, 03:30 AM

hun im so sorry! U can express here if u want. i havnt went through it as i am ttc now but i am here to listen if u need to talk! i will keep u and ur little one and ur dh in my prayers. take care and God Bless! <3

beekerbutt · 05-04-2008, 05:20 AM

I didn't have your experience but I had a complication that had it gone undiagnosed I would have lost my son in labor. The blood vessels of the umbilical cord weren't in the cord so they were exposed. They were also between the baby and my cervix. I had to have an early c-section one day shy of 37 weeks, two weeks past the recommendation for this condition. I was hysterical for the 8 days between finding out there was a problem and having the c-section. It's now 4 months later and I'm having sort of a delayed reaction. I hear it's common though. When this condition isnt' diagnosed 95% of babies die when mom goes into labor because the blood vessels break and the baby bleeds to death.

Know you are not alone, even if we haven't experienced the same thing, there are many of us out there who came close to losing a child, lost a child, or have a child with special needs. You have support here!

Good luck and take care of yourself!

Becky

siany22 · 05-04-2008, 06:00 AM

im so sorry for what youre goin through xx

uwalcott · 05-04-2008, 12:57 PM

Honey, I am so sorry for what you are going through. This is the hardest thing that a mother ever has to experience. My daughter, Elisa, has partial trisomy 3 and deletion 7 caused by an unbalanced translocation. I came very close to losing her during pregnancy and after she was born. I was given the prognosis that she had a 50% chance of living past the age of 1 year old when she was diagnosed at the age of 3 weeks.

This has been the hardest experience of my life but also the sweetest and most powerful. My daughter is 2 and a half years old now and though she is still dependent on a feeding tube and she is globally developmentally delayed and deals with many health issues, she gets better and better as time goes on. I noticed that you are a Christian by your username to live is Christ. Honey whatever happens God is by your side. Don't ever give up hope. I know they will tell you that your baby can't make it. But that may not be true.

Please visit the website livingwithtrisomy13.org if you have not already done so. On this website there are stories of children with Patau syndrome that have vanquished the odds and lived past infancy and into childhood. In my heart of hearts I believe that if everything that can be done for these children is done, their survival rates can greatly increase. I cannot tell you what choices to make but I can encourage you, from my perspective, have them do everything they can for the baby. Do not be afraid of surgery and feeding tubes and such. My daughter has had 5 surgeries and has come out of them healthier than when she started. Now the only chronic health problem she still deals with that can be life-threatening is respiratory difficulties in winter caused by asthma, and we don't even know if that is related to her chromosome problem at all.

Remember that you are the mother of this child and you make the decisions. Don't let doctors, nurses or well-meaning friends and family push you into doing anything that you do not feel is best for you and your Nathan. Remember too that God is in control and that He gave you this precious baby. God does not give us more than we are able to bear, but through the trial also provides a way for us to bear up under it and even to be delivered. God is the healer and He cares even for the sparrow, let alone the little baby that you are carrying. Trust him and enjoy every moment with your child.

If you need to talk PM me.

stapes · 05-04-2008, 04:17 PM

Thank you all so much for your support. It is a journey already for sure and I'm starting to get really worried about what is to come... what I'm going to see and deal with. I have been on the Living with Trisomy 13 website and do find strength there. As far as what to do medically, we are praying about those decisions and looking at how he is developing now and what the reality of drastic medical intervention would be. As of now, our feelings are that if he is born alive, we want to hold him and love him. My thought is to provide oxygen if he needs it and a feeding tube, but as far as surgeries... we will make those decisions as they come depending on what he needs and what will be best for him.

Right now, his problems are very extensive. Do not read further if you are sensitve...

His forebrain did not develop properly which has caused many facial abnormalities such as bi-lateral cleft palate and micrognathia (small chin). He has VSD, or a hole in his heart, extra fingers, club foot, polycystic kidneys, and a MASSIVE hernia that we just found out about this week. His hernia is about the size of his head... very big. It seems that every symptom of T13 is what he has... or at least what we can see on the sonogram. All of this because of one extra little bity chromosome.

I realize that many of these babies can and do live, but the reality is also that many of them do not. We are trying to prepare for either situation. I am creating a birth plan ahead of time of "if this happens... then do this" so the doctors know what we desire. I am also looking at the reality of it all as well.

My faith is what is getting me through and the prayers of God's people. The fact is that God doesn't make mistakes. He didn't forget that he already included two of the 13th chromosome and "accidently" add a third. No... God is using my baby to draw others to Himself. Many are coming to understand God more because of our story, so I know that there is an eternal purpose to it all. I just wish it wasn't so hard.

uwalcott · 05-04-2008, 05:39 PM

Hi stapes,

I am glad to hear that you are holding out so well under the tremendous pressure and difficulty that has been placed upon you and your family. Just wanted to share with you that my daughter has/had many of the same abnormalities as your son...and she is doing fine. She had bilateral cleft palate and a split uvula, which was repaired at the age of 1 year. She had VSD and ASD, which both closed on their own without need of surgery. She also has smaller than normal Eustachian tubes and may have misshapen genitalia (although this was never diagnosed, I just have a suspicion). Her face has a palsy on the right side, not sure if it was caused by her chromosomes or by the hard delivery I went through with her, where she almost died from decelerations (where the heart rate drops dramatically during contractions). Although she does not have the problems with hernia or kidneys that you have described, they did think she would have a club foot as well-- turns out she did not but she did have something called calcinael valgus deformity. It was corrected by walking with supportive braces and now my honey walks around everywhere! She just learned to walk at almost 2 and a half, so she is delayed, but praise the Lord she did it.

Keep your head up and I will pray for you and your son. I don't know if you believe in divine healing or not but I would like to suggest that you visit www.freshfire.org or www.god.tv. There is a massive healing service going on and has been for some time now, where many miracles are occurring including children being healed from birth defects. I have sent in a picture of my Elisa with a prayer request for her healing, and now all I have to do is stand on the Word.

God is going to do mighty things through you and your baby and He will use your child to draw all men to Himself. God bless you.

stapes · 05-04-2008, 11:57 PM

Suzi ~ Wow! Your daughter HAS overcome so many obstacles! What wonderful blessings. I do believe that God has the power to heal anything. The Bible is full of healing and I am amazed by God's power to do such things. I know that God could reach down and take out the extra chromosome in every little cell if it was in His will to do so and his power would be displayed among the people! A friend of mine calls it God "flexing His muscles" - I would love for God to flex His muscles!!!

At the same time, I believe that even if God chooses NOT to heal, then his power can still be displayed. Like I said, He is drawing others closer to Himself more through this little boy than I think He would have if Nathan were "normal." I will praise God if He chooses to heal... and I will still praise Him even if He doesn't. I know that I do not weep alone, that God weeps along with me and I trust in His perfect plan and am praying that my decisions are based on His will. That is the hardest part. Making decisions that you believe are God's will. I just don't want to regret anything for the rest of my life, so if I know that what I'm doing is from God, then there is no question or regret in that. I hope that makes sense!

stapes · 05-04-2008, 11:58 PM

Oh... and thanks for those websites! I'll check them out!

uwalcott · 05-05-2008, 12:06 AM

stapes you are one brave lady. Praise God for strong women of God like you. Ya, totally makes sense, I totally understand. Sometimes God chooses to heal immediately, sometimes healing is a process, and yes, sometimes the healing does not manifest. But regardless of the situation God deserves all the glory. Those who do not receive their healing here on earth receive total healing in heaven. I know that He is using my daughter as an amazing testimony to his miraculous power. They said that she may never walk due to the shape of her feet and her low muscle tone. Now she is walking and in a few months the braces will be able to come off. God can do anything.

I have been blessed also by visiting a website called www.ninetynineballoons.org. It concerns the story of a little boy born with Trisomy 18 (Edwards syndrome) who lived for 99 days. Many people have been blessed by the beautiful story of his life and his homegoing, and many have been saved. God used this little boy and his parents in such an awesome way. Please visit this website if you are emotionally able to handle it. It is very sad but through the tears there is so much hope. It may be too much for you to visit while pregnant with Nathan though, just be careful and only go there if you are able to handle it is very intense but in a good way.

God bless you and your family

Anonykat · 05-05-2008, 12:26 AM

I have no experience or advice to offer, but I just want to say that you are one amazing lady and I admire the heck out of you. No matter what happens, that little boy is blessed to have you for a Mommy, and you're right - God is in control.

My best wishes and prayers.

polly-pcos · 05-05-2008, 05:15 AM

I just wanted to say I admire your Faith and bravery, I can't imagine what you and your family are going through.

Best wishes

stapes · 05-05-2008, 08:50 AM

Thank you for your support.

I HAVE seen 99 balloons! I actually remember watching it before I was pregnant... then again after I found out that Nathan had his chromosome problems. It is a beautiful story, I agree.

hela · 05-05-2008, 10:40 AM

I don't know what to say to be honest but I am sending you love and hugs

CelticSpirit · 05-05-2008, 12:54 PM

Quote:

Originally Posted by uwalcott

I have been blessed also by visiting a website called www.ninetynineballoons.org. It concerns the story of a little boy born with Trisomy 18 (Edwards syndrome) who lived for 99 days. Many people have been blessed by the beautiful story of his life and his homegoing, and many have been saved. God used this little boy and his parents in such an awesome way. Please visit this website if you are emotionally able to handle it. It is very sad but through the tears there is so much hope. It may be too much for you to visit while pregnant with Nathan though, just be careful and only go there if you are able to handle it is very intense but in a good way.

God bless you and your family

I saw that site and bawled my eyes out! It was BEAUTIFUL!!!! That was such a touching story.

I have no experience with Trisomy 13 at all, but I want you to know that you and your baby are in my prayers.

Please keep us posted, OK?