In need of support

[emandp]

Hi all,

Phil and I just finished some evaluations at CHOP in Philly, and the news seems to keep getting worse for our baby (due in mid-August; we are at 21 weeks). They now diagnose her lesion as L3 (previously it was thought to be L5 or L4). They have also detected some bleeding in her ventricles -- apparently unrelated to her SB -- which they say could have no impact, or could become worse over the course of the pregnancy and accelerate enlargement of the ventricles (or, in the very worse case, cause brain damage if it were to become very severe). On the positive front, her ventricles do not yet show abnormal enlargement, her feet show no clubbing yet, and her movement is great. But we are feeling really beaten down -- just when we thought we'd adjusted to all the difficult news we could get, more comes along. We are struggling with how to assess this new information to make the best decisions for our baby, who we love very much.

We would be so grateful for any thoughts or words of support. Many thanks.

emily & phil

[blessingsabound]

Emily, We're going for our second appointment tomorrow, and I have been a little worried that things will be worse this time around, so I can understand where you're coming from. Praying for your little one--that there will be no new problems and that you will find strength to make it through this time of waiting.

Pam

[kali]

I dont know why the doctors add to your worries, and make test after test, it makes things harder on you! to be honest. you really will not know the condition of your childs health until he is born. The doctors are basically guessing. I have always been happy that I never knew my baby had sb until after he was born. Worrying doent help, and it doesnt change anything. Your baby will be beautiful wether he is L3 or L4 or L5, keep dreaming and think positive!!! hugggsssss

[jonathansmom]

We just had had our little guy in September. He started out at an S1, next appt L2, next appt L4...he was born an L5. They're basically guessing. I've come to find out that doctors tend to give you the worst case senarior to cover their behinds. Our philosophy has been to prepare ourselves for the worst so we're not suprised but hope for the best. That has seemed to work for us. There are so many possibilities out their that it's impossible to know what's going to happen. Just prepare yourself so you're as educated as possible when you need to make decisions.

[Dodger67]

Once a diagnosis has been made, there really is no point in going back for the same tests and scans over and over and over again - its not like anything can be done about it until your baby is born anyway. All you'll learn is that there is a lesion in the lumbar, thoracic or wherever, anything more specific is pointless speculation.

[lolathechecker]

when i was pregnant the doctor told me he was positive that my baby's lesion was only in the sacral portion of her spine. but the neurosurgeon said it was l3. she moves her legs donw to her knees. they also told me at one point that her lesion went from l1-l2 then closed. then they told me that was impossible. but whatever. doctors are confusing. they have to give you the worst case scenario, its to save their own butts because you can sue them for malpractice if they dont tell you about a known risk. so dont think its that terrible yet. things may look up once she is born.

[blessingsabound]

Once a diagnosis has been made, there really is no point in going back for the same tests and scans over and over and over again - its not like anything can be done about it until your baby is born anyway. All you'll learn is that there is a lesion in the lumbar, thoracic or wherever, anything more specific is pointless speculation.

Dodger: I think I understand what you're saying about repeated tests on the level of the lesion, but I must just have a different style of doctor than some. We are having an ultrasound at every appointment. At our second ultrasound, they barely even looked at the lesion, but were concentrating on the hydrocephalus, making sure that it wasn't getting worse. Thankfully it's not, and it was a relief to me that it was checked and we were not left wondering.

[mondragonl]

I have to agree that Doctors give you the worst case scenerio. And different doctors give you different information. It is an emotionally exhausting pregnancy. I remember after we found out I left the next 10 doctor appointments crying from the devesting news the doctors had given us. Then one day we talked to another new doctor for our 6th different opinion and he gave us a glimmer of hope. He was very optamistic and told us about all the good possible outcomes.
I feel very fortunite to have know about my childs myelo before birth. It gave my husband and I time to prepare emotionally and tackle some fears about having a special needs child. It also gave us a chance to meet with the medical staff who be taking care of her after birth. We met the neurosurgeon, took a tour of the NICU and met the staff, we were able to schedule a ceserian section at a date when all the medical staff could prepare for her arrival and schedule her surgery, to minimize surprises. We also had ultrasounds every 2 weeks to monitor her hydrocephalus, and this was comforting to us. Not only did we get to see our baby every two weeks, we were reasured to know her hydrocephalus status. Some babies need to be c-sectioned early to minimize the damage caused by hydrocephalus, and we wanted to be as cautious as possible. I do recomend talking to as many people as you can. Your baby will be unique, and so will your baby's SB, so all the information you get is helpful.

[Bigwilli]

I agree with guessing game. I spoke with a natal neorsurgeon today and he said certain specialist can be doom and gloom. I have read quite a bit on the net since our baby was diagnosed 2 weeks ago and it appears the results can be all over the board. I will be praying for the best for you and your husband. Hang in there and keep perspective. Things will be ok!