UPDATE:Thoughts/Prayers/Good Vibes Would Be Appreciated

nchunt101

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The wife and I have found out that our daughter has spina bifida during the 20 wk ultra sound on Wenesday. We are caught in a holding pattern until we see a specialist early next week. Her Dr was unable to give us much information other than location (low which is good) and severity of opening which causes some concern but is not worst case. Hoping for some good news.
 
Lord, I am asking that you heal this child as you healed my own granddaughter. You are faithful to do the things we ask for. We are asking for healing. Your son said "you have not because you ask not. We are asking for a whole and healthy child. A child with no defects..whole and healthy Lord. We look for healing that you may receive the Glory for this. We pray for the parents that you put their hearts at peace concerning this little girl. You are a faithful and just God. We ask these things in the name of your son Jesus Christ. Amen.

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Prayers sent
 
You and yours have been added to the prayer list.
 
Prayers for your daughter and the parents.
Matthew 6:8
“Be not ye therefore like unto them: for your Father knoweth what things ye have need of, before ye ask him.”
 
Hoping for the best for you and your family. I know we struggled with a couple issues prior to the birth of my daughter. The wife went in for a kidney stone, which prompted an ultrasound to check on our daughter to see if everything was ok. Voids were spotted on her right kidney.

Doctors originally thought she had a polycystic kidney, which could require surgery, or would not continue to develop. I know you can live with one kidney, but you also have to watch medications so you don't destroy the one you have. Went in for check ups and additional ultrasounds every 4-6 weeks.

Immediately after birth they did an additional ultrasound and identified that she had a duplicated collection system (extra ureter) attached to an additional upper pole (like a double kidney on the right side). So the initial diagnosis was completely incorrect, but they also identified that she had a uretercele that needed to be addressed. At two weeks old she was placed under anesthesia to have the uretercele perforated. Being at UNC's children's hospital is a tough place to be. I know we were blessed to have something so minor and correctable, but it was still a challenge to have no control over the outcome.

A year's worth of terrible VCUG testing occurred after the surgery to ensure there was no reflux from the bladder to the kidney. It's hard to watch your child scream in pain, knowing it's for their own good, and worse yet that you can't explain to them what is going on.

She's now a healthy and happy, normal 2.5 year old that loves Paw Patrol and throws terrible tantrums.

I know things look tough now, but kids are very resilient.
 
Good friends of ours found out their son was diagnosed with SB prior to birth. He is now probably 10 or 11 years old, and is very active. He uses braces to walk. But he also plays wheel chair basket ball with the Charlotte Rolling Hornets. If you would like, I could get you in touch with them if you want to have someone to talk to with similar experiences.


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Hoping for the best for you and your family. I know we struggled with a couple issues prior to the birth of my daughter. The wife went in for a kidney stone, which prompted an ultrasound to check on our daughter to see if everything was ok. Voids were spotted on her right kidney.

Doctors originally thought she had a polycystic kidney, which could require surgery, or would not continue to develop. I know you can live with one kidney, but you also have to watch medications so you don't destroy the one you have. Went in for check ups and additional ultrasounds every 4-6 weeks.

Immediately after birth they did an additional ultrasound and identified that she had a duplicated collection system (extra ureter) attached to an additional upper pole (like a double kidney on the right side). So the initial diagnosis was completely incorrect, but they also identified that she had a uretercele that needed to be addressed. At two weeks old she was placed under anesthesia to have the uretercele perforated. Being at UNC's children's hospital is a tough place to be. I know we were blessed to have something so minor and correctable, but it was still a challenge to have no control over the outcome.

A year's worth of terrible VCUG testing occurred after the surgery to ensure there was no reflux from the bladder to the kidney. It's hard to watch your child scream in pain, knowing it's for their own good, and worse yet that you can't explain to them what is going on.

She's now a healthy and happy, normal 2.5 year old that loves Paw Patrol and throws terrible tantrums.

I know things look tough now, but kids are very resilient.
Thanks---I needed this. I generally handle things well but the diagnosis me harder than my wife. Not being able to make things better for both my wife and soon to be baby daughter was a hard pill to swallow.
 
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I have a second or third cousin that was born with spina bifida, so prayers sent
 
Thanks---I needed this. I generally handle things well but the diagnosis me harder than my wife. Not being able to make things better for both my wife and soon to be baby daughter was a hard pill to swallow.

It takes a lot to upset me, and I generally don't show any emotion; however, having a child with a condition that you have absolutely no control over the outcome is completely disarming.

It is going to be tough at first, absolutely, there is nothing you can do but be strong for your child and wife. That doesn't mean that you can't show what you're feeling. Rarely do I ever cry or show any emotion, but when the anesthesiologist took my daughter back to the OR and left us in the waiting room that night, I broke down.

Looking at what everyone was dealing with throughout the day at the UNC children's hospital really put it in perspective, and things could have been so much worse, so we were really blessed to have things work out the way they did. Just take it a trip at a time and always remember to keep things in perspective.
 
My prayers for you and yours.
 
Prayers for all of you.
My aunt had this and lived a fantastic life and did just about everything a person could do, including being a woman in a very competitive, man-oriented field back in the '60s at Bowman Grey. I'm sure medical technology has come a long way since her time, but nothing stopped her!
 
Thanks for all the thoughts&prayers. The past month has been the worst in my life. Follow up appointments and meetings with several specialist at UNC-CH, Duke and CHOP (Childrens Hospital of Philidelphia) brought to light further complications related to the Spina Bifida and other unrealated developmental defects that made the pregnancy unviable and we lost the baby Tuesday. Death,pain and loss are not new to me but this is the hardest thing I have ever faced. Not shutting down and going to a dark place is becoming a struggle but I know I have to be here for my wife and stepson. Thankfully he has been with his dad but we will be telling him this weekend most likely. All I can say it hurts. I will avoid giving my thoughts on god or religion but the only thing that is sustaining the single thread of faith I have is the hope I will see me daughter again some day and know she is in a better place. Her name was Evelyn Doris Thompson --- her middle name was my grandmother's who I hope will take care of her until I can.
 
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I'm sorry for your family's loss. I know it isn't much comfort now, but things worked out for the best for the child in the case of the conditions that existed. Only time will heal your pain. Do not hesitate to reach out if you need anything in your time of loss.
 
I'm so very sorry to hear of your family's loss.
All of you are in my thoughts and prayers.
 
God knows.
God knows the pain.
God knows the hurt.
God knows the loss.
God knows.
Lean on Him during these trying times.

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I'm very sorry for your loss. Lean on us if you need to.
 
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