[VERY SCARED] Our Baby May Need Major Surgery - Mothering Forums

 
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#1 of 27 Old 03-28-2005, 01:44 AM - Thread Starter
 
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Hi Mamas...I would love any advice you may have to offer in this situation. I would love assistance on how to keep Jett vaccine-free in light of what may have to happen to him. He was born at home, with midwives, has never been to a well-baby visit, or any other doctor, except for our ER doctor friend, who I mention below. I am afraid, now, that they will want to push vaccines or require them or something. I am in Pennsylvania. I am not religious, but grew up and maintain some ties to the Methodist church.


To save myself some grief, let me cut and paste from my Dec. 04 mamas thread:

Quote:
He has not yet been to a specialist, but we are nearly 100% sure that Jett has something called Craniosynotosis. It is where the different pieces of the skull join together too soon and force the brain to grow in the wrong direction. In Jett's case, the joint (suture, it's called) that runs from the front fontanel to the back of his skull is closed, so his head is getting longer in the back where he brain is growing. It requires surgery to re-open the skull and then he would have to wear a helmet to keep his safe and correctly shaped. Without treatment, the malformation would become extreme and could cause pressure leading to blindness, mental retardation, etc.

I am just utterly sick over this. We found out yesterday, talking to an ER doc friend and perusing the internet. I feel like I'm going to vomit, I haven't done a single thing. I am soooo scared for my baby.

To make it worse, Shanon (DH) just took a new job and we do not yet have health care. It will be about a month before it is in place. I have found a team in San Antonio, TX that specializes in this condition and do it endoscopically, allowing better results, quicker healing, less pain, shorter surgery time, etc. However, on their site, they say, "Length of surgery is at or under one hour, and almost all patients have been discharged from the hospital on the morning following the surgery. The cost of hospitalization is also decreased significantly. However, best results are obtained when the babies are less than six months and preferably three months of age." Well...Jett's 3.5 months as of two days ago and by the time we have insurance, he will be 4.5 months. We can't afford for this to be a pre-existing condition, but for his sake, it sounds like we can't afford to wait.

If you look here: http://www.craniosynostosis.net/about.html You'll see the "Sagittal" type. That's how Jett's head looks. If you look on the Results page, you can see more photos that look similar to him, albeit Jett is less extreme.

On one hand, I am thankful that it is curable and he will be normal. But, at the same time, it is no comfort. I am just so upset right now. I don't even know what to think. Shanon is away until tomorrow night. We slept last night with our cell phones on speakerphone all night. Thankfully, we have unlimited mobile to mobile. We have been perusing the internet together, researching and sharing links. God, I just wish he was here with me. I feel so bad for him, stuck in a hotel, trying to deal with this.

I have searched Mothering for any like-minded mamas that have been through it, but I got no results. The cranio board moves extremely slowly, so that is no help. Besides, most of those mothers probably wouldn't care if their baby got formula or had to be away from them for a little bit. Not that they don't love their kids, but if they aren't AP, babywearing mamas, they won't understand my added distress. Jett's never had a bottle of EBM, I have no idea if he would even take one.
I'm feeling quite at a loss right now and would love to have any advice you dear mothers can offer. Thank you, thank you, thank you.

SAHPilot Mama to a 5yoson, a 17 mo old daughter, and wife to .
Worried about your baby's head shape? PM me for craniosynostosis info!
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#2 of 27 Old 03-28-2005, 01:52 AM
 
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Aww mama! I dont really have any advice but I would like to send you a big

Being vax-free shouldnt matter. Surgery is surgery regardless of his vaccine status. Just tell them you do not want any added stress to his immune system while he is healing for surgery. We'll be thinking of you and your family!


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#3 of 27 Old 03-28-2005, 02:04 AM
 
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I just wanted to give you a

I followed the link you gave and I must say the results are wonderful!

I will be praying for you and your family
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#4 of 27 Old 03-28-2005, 02:10 AM
 
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to you and baby, my best friend has twins and they suspect this in the smaller baby, he just had a ct scan and are still waiting on the results.

Vaccine status should not make a difference for this type of surgery and although I really don't have any advice I want to say it is a blessing that they are able to test for this now and correct it while baby is still young.

I pray that everything goes smoothly and he comes out healthy and well...
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#5 of 27 Old 03-28-2005, 02:30 AM - Thread Starter
 
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I had thought about the fact that I didn't want to add further stress to his immune system as something to say to them.

You don't think I'll get hassled about not having a current doctor or a vaccine record? I hope you are right!!

SAHPilot Mama to a 5yoson, a 17 mo old daughter, and wife to .
Worried about your baby's head shape? PM me for craniosynostosis info!
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#6 of 27 Old 03-28-2005, 02:40 AM
 
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my son had a surgery when he was 2.5 years old. when we met the surgeon his office asked about his vax status and I said "we're delaying." No one asked again.

My girlfriend's daugher had major heart surgerywhen she was 4. No one even asked about her vax status. She was non-vax.

Make it a non issue in your mind. You've got enough stuff on your plate anyway.

If they ask, "say we're delaying now." And of discussion. You do not have to justify your position to anyone. Including your child's surgeon.

Hugs.

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#7 of 27 Old 03-28-2005, 03:36 AM
 
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Wow, how strange I read this...I never really come to this board but I just had to comment. My cousin has twins who are coming up on 2 years old. Her youngest son had the same problem but most likely worse. They are in southern Ca and flew every specialist from around the globe in, and they said his was the absolute worse case they had ever seen. There is no doctor in this country they knew of who had seen a case or opperated on like his. To make a long story short he is a healthy happy completely normal boy. His helmet didn't actually do 100% what it was suppose to, so his head is slightly, and I do mean slightly mishapen. But he is for certain the most adorable, loveable, incredibly well natured little boy! He will need another surgery when he is a couple years older, but he is living proof that children are capable of amazing things! They told them that if he didn't have this surgery his brain would stop growing and he would remain the inteligence and mental capacity of the age he was then.

I probably don't agree 100% with everyone about no vax, but I would never try to tell anyone what they should or should not do. What I can tell you is that I do know one boy who not only survived this but beat all odds and has conquered the world at the age of 2!
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#8 of 27 Old 03-28-2005, 04:11 AM
 
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I do not know enough to doubt your diagnosis. But I do know there has been a great large number of children diagnosed with this and treated that do not have it - it's been one of the those "the unneccesary treatment being advised for your child - tonight at 10 pm" news things a few times. Is it possible that your dear boy will be okay without surgery?
http://www.cranialtherapies.com/arti...entleforce.htm
"The American Academy of Pediatrics says recommendations for surgery to correct an infant's misshapen head should be viewed cautiously. Recommendations for such procedures should be confirmed with a second and even third opinion."

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#9 of 27 Old 03-28-2005, 05:00 AM
 
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I have a friend whose son was also born with craniosyntosis. His surgery was scary of course, but he breezed through it, barely has a scar and should never need another surgery for this again. I was also a neonatal nurse in a previous life, and although we did not see many cases, the surgeries were not considered that complicated nor as scary as they sound.

As for vax, that should not be an issue during his care. Surgeons are not generally concerned about this. The only concern I would have is not to be "labelled" by uninformed nurses or staff as the "crazy granola mom". The best way to avoid that is to be brief and honest, and appear quite informed and confident about your choice. He's a little guy, still, yes? I personally might just tell them that at this time you are choosing to delay his schedule due to your own research and concerns, your schedule and your choices are between you and your regular caregiver, after all. Honestly, more and more mainstream staff due question the early schedule, esp Hep B, so would not find it that concerning that a newborn had not yet been vaxed. What your plans are later are not really an issue for the surgery, and they do not really need to know exactly what you plan to do later, currently he is pretty thoroughly protected by your breastmilk and immunoglobulins.

Sending love to your sweetie, don't make any assumptions until you do see that specialist who can truly confirm the situation. Much love!
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#10 of 27 Old 03-28-2005, 09:11 AM
 
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I'm sorry mama.

Billy had surgery a couple of years ago and I was not asked for a vaccine record at all.

Does your state have a children's health program like CHIP? I would look into either that or medicaid and see if you are able to qualify temporarily.
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#11 of 27 Old 03-28-2005, 09:50 AM
 
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Jaclyn,

My dd was born with craniosynostosis (the coronal suture was involved) 10 years ago. She had surgery at 8 months (wasn't correctly diagnosed until she was 6 months old --long story.) I also had read that the surgery should be done early, and I was concerned about that, but the correction was very successful. Endoscopic wasn't an option at the time, nor were helmets, so I can't offer help there, but if you want to talk, pm me.

I WAS pressured into vaxing her by the ped though--and I caved. The doc used arguments like, "there are a lot of sick people in the hospital" and "measles is going around." I had no non-vaxing support irl, and no internet connections, and being preoccupied with her coming surgery, I gave in. I should have asked them if they get a lot of measles cases on the surgery floor, : or asked if staff washes their hands in the picu unit, or if they use masks and gloves around contageous patients--

What I'm getting at, is, prepare yourself to back up your decision to not vax, just in case you're faced with pressure. It surely will do her system no good to be stressed by vaxes. Claiming a religious exemption would probably be your best bet.

As for insurance, talk to the doctor about your situation, they may be able to work something out with you. Also, in our state, there was something called the "catastrophic illness in children relief fund" for people without insurance coverage. Your state health department should be able to tell you what's available--or try speaking to the hospital social worker about resources that may be available to you.

Incidentally, is Kenneth Sayler the doc in Texas? I remember reading an article about his team a looong time ago.

Best wishes.

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#12 of 27 Old 03-28-2005, 09:55 AM
 
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#13 of 27 Old 03-28-2005, 11:07 AM
 
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One of my children (now 11) needed major surgery at age 8 mos (a 7 hour procedure) and he was/is completely unvax'd. His surgery was done at Boston Children's Hospital and it was never an issue. In fact, i don't think it even came up. Maybe it came up at the intake, I can't recall, but nothing was said questioning it. I'd remember. lol if it had, I would have said we don't currently vax, and certainly I would not tax the system of baby going into surgery with vax material. Due to the nature of the surgery, he's seen every year by by the surgeon. In over a decade, his nonvax'd status has never even come up.

The only thing perhaps, would be a baby who needed surgery before a week old. In that case, they would probably give Vit K. But otherwise, i don't see how vax would have any bearing on any surgery.

That was the first and last time my child even had antibiotics. (They gave them during the surgery).
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#14 of 27 Old 03-28-2005, 01:45 PM
 
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Most interesting to note is that vaccines are ONLY TESTED IN HEALTHY children, so they have no idea how a child with pre-existing medical conditions would fare with each and every routine vax on the market. Scary.

If you are exempt from vaccines, that is all they need to know. My son had open heart surgery at 6 weeks of age and was unvaccinated at the time. They didn't seemed a bit concerned about his vax status.

I would recommend based on experience, that if at all possible, you have a family member with your child at the hospital at all times, record each and every procedure and medication given.
Never leave your child's side, and make sure hands are washed before anyone attends your child, and if an attending nurse/dr/trainee etc have long fingernails, make sure they are wearing gloves!

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#15 of 27 Old 03-28-2005, 01:59 PM
 
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No advice... just love to your family.

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#16 of 27 Old 03-29-2005, 02:04 PM
 
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It can be relatively easy to find a family doctor who will support delayed vaxes. While this doesn't help in the long run, in the short it does. Our family doctor didn't have a problem with my not vaxing my dd at her 3 mo appt, he simply said don't put it off too long. (I'm searching for a new one now and have an appt next week with someone.)

As the child's parent you have the right to refuse treatment at any given time. It isn't in the best interest of the child to start vaxing before or after surgery and I think some medical professionals get that.

Do check out your links to your state's law. Do stand firm in your choice. And remember a religious exemption is not necessarily affliated with a set religion. Your religious beliefs can be based on "phylisophical beliefs" and don't have to revolved around a major religion -- it can be your own religion.

HUGS to you, my dd needs a minor procedure done and that has me wigging out, so I can only imagine major surgery.

I wouldn't worry too much about it. You will start seeing specialist soon and they aren't in the business of vaxing children.
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#17 of 27 Old 03-29-2005, 09:07 PM
 
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Most people have covered most things, except your worry about formula.

If you can start expressing some time before his operation and have some breastmilk there on hand, there should be no issue about that.

And if its just an overnight thing whatever you take them to give him, should be enough to get him through that.

Just make sure that before surgery your levels of beta carotene are good, and that he has had plenty of vitamin A from you in the weeks before hand. Why?

“Vitamin A prophylaxis” ( Arch Dis Child, September 1997; 77 (3) 191 – 194 online
http://adc.bmjjournals.com/cgi/conte...child;77/3/191 ),

by Alfred Sommer, Johns Hopkins School of Hygiene and Public Health

Quote:
: “the depression in circulating lymphocytes following surgery can be reversed by the administration of high-dose Vitamin A to adults”.
Well, what about babies?

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#18 of 27 Old 03-29-2005, 11:22 PM
 
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I hope so very much that everything will be going alright with your child. s

But I too think you should not worry about his vaccine status. They may not even ask you.

My grandson has an undescented testicle from birth and had surgery at age 3 (we thought it might repair itself). We had stopped vaccinating him by ca 18 months. His last vaccine was measles only. No one asked about vaccines at all.

He still had a pacifier at the time, we worried more about that and the fact that he was intact. We didn't want them to circ him 'accidentally' or insert a cath and retract him.

He had an external cath and got his 'mini' (pacifier) right after he woke up from surgery. Everything went well.


I hope the same for you and your son. s
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#19 of 27 Old 03-29-2005, 11:24 PM
 
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Hugs to you, mama. Follow your heart for your little one.
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#20 of 27 Old 03-30-2005, 08:37 AM
 
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Quote:
Originally Posted by Momtezuma Tuatara
Most people have covered most things, except your worry about formula.

If you can start expressing some time before his operation and have some breastmilk there on hand, there should be no issue about that.
Ooooh--I meant to do this. I was able to nurse dd right after surgery--she still had a lot of wires and tubes, but I was able to nurse her in the cradle hold. She slept a lot the first few days so I ended up pumping and dumping just to relieve myself, but the only thing she had by mouth was my milk. Let your docs know ahead of time that you want to be able to nurse and ask that they write in your baby's chart that he be nursed on demand. There is a surprising number of medical staff who are ignorant about nursing, so having it noted in your ds's chart might be helpful.

Also, you should speak directly to the anesthesiologist about eating/drinking before surgery. The hospital had told me nothing by mouth from 8:00 the night before. That seemed like a loooooongggg time for an infant to go without, so I spoke to the anesth. (who happened to have a nursing baby at home) and he said that she could nurse up until a few hours before the surgery. (I forget the actual number of hours, but those instructions got us through the night.)

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#21 of 27 Old 03-30-2005, 11:39 AM
 
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CAll your local health and human services office ASAP and get state insurance for the baby. My Dec baby has it as back-up for the insurance we just got. If baby is currently not coverd by anything and under 1 (obviously) there should be no problems getting him covered. I pray things go well and things happen quickly to fix the problem!

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#22 of 27 Old 03-30-2005, 11:50 AM
 
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Past_VNE,

My son had surgery when he was 7 months old. Vaccinations never came up. I do not want to make you worry more, but I do want to make you aware that the foreskin was more of an issue. I needed to make sure that my son's foreskin was safe. So, I used a form that I found online and catered it to my situation. Basically it stated, if anyone forcibly retracted my son there would be hell to pay. His operation was in that region - inguinal hernia and undescended testicle. So, a catheter was necessary. An experienced medical professional should know how to do this without retracting the foreskin.

I just want to give you a heads up... If you are interested in the form I used, I can try to track it down, let me know.

~Laura
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#23 of 27 Old 03-30-2005, 12:27 PM
 
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My son had surgery in January and they asked, "Is he up to date on his vaxes?" I replied, "He's not vaccinated." And that was it. They never told me that he needed them, they never refused treatment, they never offered. This was at a huge children's hospital in Florida.

Much love and light to you.
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#24 of 27 Old 03-30-2005, 12:35 PM
 
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Sending prayers and well wishes to you and your baby.
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#25 of 27 Old 03-31-2005, 08:22 PM - Thread Starter
 
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I want to respond to all of you, but for now, will just say THANK YOU for all of the advice and support.

It looks as though we will have insurance as of Apr. 1. DH's company pulled some strings and worked hard to help us out.

Gitt and laurajean, you are both on the ball about intactness. It is something that has had me afraid since I first thought of surgery. DH was circ'ed against his parents' expicit wishes, so this really hits home for me. I will, undoubtedly, be speaking, probably at length, about this to my doctors and surgeons. A form is a good idea and would love to see yours if it not too much trouble, Laura. I will require that an external cath be used, if one is required and be explicitly clear about no retraction, not even to have a peek, not even a little tiny bit.

I will be expressing milk starting soon and will head over to the Breastfeeding board to look into the best storage methods.

I'm feeling much better about the vax issues and am now more worried about the other details like circ/retraction, us staying in the ICU with him, potential complications, side effects, pain, etc.

I've had some great PMs from mamas who have been through it. They give me some enlightenment that not all docs are horrible. As soon as I am calm and collected enough, I will write back to them all.

Please, if you are 'that kind of mama,' keep Jett in your prayers or thoughts. It would mean the world to me.

SAHPilot Mama to a 5yoson, a 17 mo old daughter, and wife to .
Worried about your baby's head shape? PM me for craniosynostosis info!
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#26 of 27 Old 04-01-2005, 01:41 AM
 
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I am in Pa and whenever i have had to formally submit a vaccine record this is the very simple vaccine exemption form accepted in Pa
To Whom It May Concern,
I am the parent or guardian of _________________________ and I object to the following procedures for my children on religious grounds or on the basis of strong moral or ethical conviction similar to a religious belief.

_______ Immunizations
_______ Medical Examinations
_______ Dental Examinations

Sincerely,


____________________________ ________________
Signature Date

I then always add about no flouride and not to ever tell my children that they need flouride for a healthy mouth

I hope your baby does wonderfully if you do decide to have the surgery. Lots of hugs and prayers for him and for you!
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#27 of 27 Old 04-02-2005, 04:10 PM
 
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Hope everything goes well!
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Most users ever online was 449,755, 06-25-2014 at 12:21 PM.