Calling all NW Ohians... Urgent... [Archive] - Glock Talk

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Indy_Guy_77
08-24-2012, 05:33
Hi all,

My wife & I got word last night that her sister's baby has been diagnosed with Spina bifida (http://en.wikipedia.org/wiki/Spina_bifida). Baby is still ~15 weeks or so from due date.

They are in urgent need of GOOD recommendations for a Children's Hospital, a pediatric neurosurgeon, and, equally important, a SUPPORT GROUP.

I hate to call their nearest largest town (Defiance) a po-dunk town that doesn't offer any of that - fact is, though, that Defiance is just too small to offer the healthcare they need right now.

So I'm turning to GT's several thousand members.

I will take any and all recommendations on the healthcare aspect - but I'd really like some support group information if anyone can provide it.

Thank you in advance,

-J-

stolenphot0
08-24-2012, 05:38
Sorry to hear of their situation. I am sure it's tough.

Two words for medical care that's worth the trip - Cleveland Clinic. Other option is Children's in Columbus or come down to Children's Medical Center in Dayton. It's a top notch pediatric center.

As for support groups, I don't know of any.

Gallium
08-24-2012, 05:49
IG,

Have they yet arrived at a determination as to what type/severity?

We will keep her and the baby in our thoughts and prayers.

Combatcomm
08-24-2012, 06:47
Children’s hospital in Akron use to be a great hospital. Igrew up in a town about 20 miles away and they were where you went if you had seriousillness. I don’t know how they are now as I left over 30 years ago when Ijoined the military.
Prayers sent for your family.

Indy_Guy_77
08-24-2012, 06:57
IG,

Have they yet arrived at a determination as to what type/severity?

We will keep her and the baby in our thoughts and prayers.

I don't know what THEY might know.

When my wife called & talked to her sister yesterday, sister didn't even mention it to my wife. Then my wife gets a call from her "dad" (sister's dad - she's technically my wife's half-sister) and he's completely bent out of shape upset about it. That's how my wife found out.

Hopefully there's an A+ place to be in Columbus - logistically that'd be much easier for them. That's my thinking, though - and I'm not in that situation.

Mrs.Cicero
08-24-2012, 07:10
Try Rainbow Babies' and Childrens' Hospital in Cleveland. I was treated there (25 years ago). Sorry I don't know Columbus well enough to have any clue there.

Mrs.Cicero

hamster
08-24-2012, 07:33
Cleveland Clinic is the most logical first stop in Northern Ohio.

Contact:
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=3732

His office will be able to refer your sister-in-law to the best folks to talk to in the Cleveland clinic foundation.

Indy_Guy_77
08-24-2012, 08:17
Thanks for the suggestions, folks. I appreciate it.

I'm passing along the info.

Indy_Guy_77
08-24-2012, 08:24
Ok - found a support org. not too far from their home.

Seems the Cleveland Clinic is a much bigger animal than the Children's Hosp. in Columbus.

We'll see how well some of this information is received...

vikingsoftpaw
08-24-2012, 13:13
Cleveland is home to: University Hospital's RBC, Rainbow Babies and Children's Hospital. It's top notched.

PPinesRon
08-24-2012, 14:43
My wife and I were in a similar situation. We went through testing, were given the option to terminate the pregnancy before the end of the 1st trimester because the diagnosis was a severe case of spina bifida. We couldn't/wouldn't terminate. The night before the birth, the baby failed the stress test, doctor said the cord was wrapped around the baby's neck. Those 7 months were the most stressful I've ever been through. Bottom line, the "baby" just graduated law school and has zero physical issues, other than trying to keep a few extra pounds off (as most of us do). A coworker also had the same diagnosis, options and his daughter was born with no issues either about the same time as we did.

I don't want to give you false hope, but my advice would be to wait and get a good diagnosis (or 2 or 3) after the baby's born. Be strong for Mom and deal with what you got when you know. Good luck. My thoughts and prayers are with you and your family. Take care.

Indy_Guy_77
08-27-2012, 05:39
My wife and I were in a similar situation. We went through testing, were given the option to terminate the pregnancy before the end of the 1st trimester because the diagnosis was a severe case of spina bifida. We couldn't/wouldn't terminate. The night before the birth, the baby failed the stress test, doctor said the cord was wrapped around the baby's neck. Those 7 months were the most stressful I've ever been through. Bottom line, the "baby" just graduated law school and has zero physical issues, other than trying to keep a few extra pounds off (as most of us do). A coworker also had the same diagnosis, options and his daughter was born with no issues either about the same time as we did.

I don't want to give you false hope, but my advice would be to wait and get a good diagnosis (or 2 or 3) after the baby's born. Be strong for Mom and deal with what you got when you know. Good luck. My thoughts and prayers are with you and your family. Take care.

Thanks for that, sir!!

As of yet, I don't know what the severity has been Dx as - my wife and I may never know. She's being tight-lipped about it - and doesn't seem to be reaching out to any family for help (that I know of - at least not her maternal family)

One of my cousins is right around 17 years old - she too has S.B. I believe that she was one of the first to have undergone in-utero surgery if I remember correctly.

She's only a few weeks removed from her 32nd or 33rd surgery. I guess her S.B. was "severe" - but quite treatable (as opposed to severe and not treatable, I suppose?)

She leads quite a busy life - camps, on a traveling wheel-chair basketball team, she SCUBA dives, and will be driving soon - as soon as the monies can be found to outfit a car with hand controls. She CAN walk - but it's a struggle.

We just want to be sure that we're available should we be needed.

-J-

.264 magnum
08-27-2012, 06:02
My wife and I were in a similar situation. We went through testing, were given the option to terminate the pregnancy before the end of the 1st trimester because the diagnosis was a severe case of spina bifida. We couldn't/wouldn't terminate. The night before the birth, the baby failed the stress test, doctor said the cord was wrapped around the baby's neck. Those 7 months were the most stressful I've ever been through. Bottom line, the "baby" just graduated law school and has zero physical issues, other than trying to keep a few extra pounds off (as most of us do). A coworker also had the same diagnosis, options and his daughter was born with no issues either about the same time as we did.

I don't want to give you false hope, but my advice would be to wait and get a good diagnosis (or 2 or 3) after the baby's born. Be strong for Mom and deal with what you got when you know. Good luck. My thoughts and prayers are with you and your family. Take care.

That's so awesome.

PPinesRon
08-27-2012, 09:03
That's so awesome.

I've never been so scared in my life. I hope nobody has to go through it. I was before, but I'll forever be truly greatful for everything I have.

Indy_Guy_77
08-27-2012, 12:38
My wife & I are concerned at how they're REALLY taking this - mentally & spiritually speaking. This is on top of a first baby who was 5 weeks early (she's about 15mos old now) who may very well be slightly developmentally delayed herself due to it.

Again - my wife and I just hope to "be there" for them - but it's difficult since they're 3 hours away.

-J-

Indy_Guy_77
11-23-2012, 12:18
Update : baby Belle was born this morning around 0930 via scheduled C-Section.

All things are well, all things considered. Baby has surgery in the morning to repair the external site. They'll be a few weeks in the hospital to heal before being allowed to take her home.

Gallium
11-23-2012, 14:09
Update : baby Belle was born this morning around 0930 via scheduled C-Section.

All things are well, all things considered. Baby has surgery in the morning to repair the external site. They'll be a few weeks in the hospital to heal before being allowed to take her home.

Thanks for the update. I am still rooting for her.

PPinesRon
11-23-2012, 14:47
Thanks for the update. I am still rooting for her.

Ditto, prayers also. Keep us updated.

airmotive
11-23-2012, 14:48
Ya know, Peyton Manning set up a decent li'l shop here in Indy.

railfancwb
11-23-2012, 15:38
Maybe too far away, but Vanderbilt in Nashville TN and Danny Thomas in Memphis TN both have good reputations for child care.


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Indy_Guy_77
11-23-2012, 19:18
They picked a good hospital in Cincy Children's. If they were in Indy, it would have been Riley all the way!

Kingarthurhk
11-23-2012, 19:24
My son has that. It gives him some back pain, but he has been to a Children's Hospital and chiropractors. It is just something he lives with. It hasn't affected his growth, he is tall for his age. Long drives do hurt his back, however.

smokin762
11-23-2012, 20:56
My wife and I were in a similar situation. We went through testing, were given the option to terminate the pregnancy before the end of the 1st trimester because the diagnosis was a severe case of spina bifida. We couldn't/wouldn't terminate. The night before the birth, the baby failed the stress test, doctor said the cord was wrapped around the baby's neck. Those 7 months were the most stressful I've ever been through. Bottom line, the "baby" just graduated law school and has zero physical issues, other than trying to keep a few extra pounds off (as most of us do). A coworker also had the same diagnosis, options and his daughter was born with no issues either about the same time as we did.

I don't want to give you false hope, but my advice would be to wait and get a good diagnosis (or 2 or 3) after the baby's born. Be strong for Mom and deal with what you got when you know. Good luck. My thoughts and prayers are with you and your family. Take care.

My ex and I had something similar when she was pregnant with our daughter. We were very nervous about the situation. My daughter was born with an open hole in her back. Over time it closed up on its own. I remember having to keep the area extra clean when it came to diapers.

My daughter is now 14 years old. She has been doing ballet since she was 4 years old. She is an awesome dancer. She is tall and thin with red almost orange hair. She is very flexable.

Indy_Guy_77
11-26-2012, 11:14
Weaning the baby off of the respirator is going to be a challenge...

Guess that yesterday, while she was nursing, she fell asleep. And quit breathing...

She had to be massaged vigorously to A) wake her up and B) get her breathing going again.

Long road ahead...

PPinesRon
11-27-2012, 16:20
I'm saying a prayer for you everyday.

Bow Commander
11-27-2012, 23:02
So sorry to hear of this situation. I sent one up to the big man for child and family.

NBT
11-28-2012, 00:45
Sorry to hear of the problems with the baby...will keep them..everyone in prayers. Before we moved to FL...the wife and I both worked at The Toledo Hospital. I did high risk pre-natal tranports from little community hospitals...back to Toledo...Cleveland Clinic.... University of Michigan Hospitals. Toledo Hospital was the only level III perinatal hospital in the area at that time...not sure where they stand now...but the MICU ( mobile intensive care unit) is capable of transporting the baby to a "better" hospital if needed.

Sgtsaj
11-28-2012, 15:13
I'm glad that the kid is being taken care of and the child as well as family will be in my prayers. As far as the suggestions go, I've got $00.02, my child was born at 27 weeks 3 days (over 3 months premature) back in August and later developed a serious infection (Group B Strep.) he was born at Hillcrest (A Cleveland Clinic Network Hospital) and the neonatologist told us "We are not equipped to provide the level of care that your child needs, neither here nor at our main campus. I'm transferring him to Rainbow." It's interesting to note that University Health Systems and Cleveland Clinic are competitors for business, so a Cleveland Clinic physician making that decision speaks volumes about the quality of pediatric care at Rainbow. Cleveland Clinic is widely renown for their heart specialists and is consistently world ranked in other areas, but when it comes to pediatrics, Rainbow Babies and Children's Hospital apparently has them beat.

Indy_Guy_77
11-29-2012, 08:07
Thanks for the prayers, folks. They (and I!) do appreciate it.

My wife talked with her sister (baby's mommy) yesterday. They're thinking that they will have to install a shunt in her head to help relieve the buildup of spinal fluid (I presume?).

Evidently baby is giving some signals/symptoms that it will be needed.

Don't know when it'll happen.

Our whole family is quite grateful to the Ronald McDonald House, too. Without them - this whole situation would be much much worse.

-J-

stolenphot0
11-29-2012, 08:33
They picked a good hospital in Cincy Children's. If they were in Indy, it would have been Riley all the way!

Missed when they picked this, but glad they got to a place that could be prepared for whatever might have been needed.