Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

[reillybug]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

My heart goes out to you. How HORRIBLE! Social Services are there to PROTECT children, not hurt them! Foster parents are required to take courses on how to handle children who have been taken from their homes & placed in CPS care, as well as general knowledge on how to care for children. Obviously, the state you live in does not agree. I think you need to hire a lawyer IMMEDIATELY. This sounds like discrimination.
It seems that Rebecca did not like you, or the fact that she was WRONG, and your child is fine, and won't stop until the child suffers. (Even more than he already has) Then, you need to go to the press - your local TV/Radio stations, anyone who will listen. Then, call the headquarters of the Dept. of Social Services in your state - don't go local, obviously, they have you "pegged". You need to go to the top. Tell them you will not stop until you have an apology, a statement that they will leave your family alone, and that they fire Rebecca AND Sharre. Then confirm that they will not allow the two male foster parents to care for any other children. They do not care for children, they only want the check that comes with it. I think an investigation for the entire DSS in your areas need to be launched immediately. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

My prayers are with you and your family. This is an outrage, and I can only hope they leave you alone. Good luck & keep us posted.<img src="i/expressions/heart.gif" border="0">

 

[Bill]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

Hi, I'm Bill, father of a "young man" with CF. When I started reading your message, I found a number of similarities to my son's birth. Immediately after his birth, the doctors noted some type of problem with his health and my wife and I weren't immediately aware of just what the problems was or might be. The only thing we knew was, they would not allow us to see him, and he was being monitored for some, unknown, type intestinal problem. Finally, 10 hours after his birth, we saw a doctor, who described the problem as a possible bowel being twisted. They had called in a surgeon and wanted permission to operate. We gave our permission and 12 hours after he was born, he was in surgery. They found he had a hole in his large intestine and some of his intestine was removed and he was given a colostomy. The colostomy remained for 6 months and yes, I know the problems you went through keeping it clean and irrigating the dormant part. It was not fun. Our son grew to be a very happy baby. After his colon was reattached, he was slow to recover, but did! As with anyone with CF, he's had his ups and downs. He is now 46, living alone in Texas (my wife and I live in VA), has a full time job, trys to play golf at least once a week (when he's feeling good). He did just go on home IVs this past Friday and is currently not feeling great and plans on not going to work tomorrow. I'm on standby to fly to Texas, if he needs help. After, the intestinal problems in your msg, our similarities stopped. It was very difficult for me to comprehend what happened to your family. Therefore, I will not comment. But, I wanted you to know there are others out there who started out the same way and are still fighting the good fight. My prayers are here for your son and all of your family. Bill

 

[fostermom]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

I am soo sorry to hear your story. I am a Catholic Foster mother who again shakes her head at the court system!! Most of us are good people who just want to help kids. We are told that everytime you move a child, they are damaged. I really believe this, after seeing the children first hand. I am also a "treatment" foster parent, which is who should have been taking care of your son. We have 16? extra hours of training. We will be praying for you and your family.

 

[anonymous]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

PLEASE CONTACT THAT LAWYER MENTIONED ABOVE!!!

You must have a case against that Dr and cps woman!!!!! That is the most horrible thing i have ever heard!!! Are you now seeing a Credited CF clinic and CF doctors???
Your son is precious and am glad he is in your arms now!

 

[anonymous]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

Your story has really hit a spot with me because my daughter is in a similar health situation. Despite having a g-tube and receiving night feeds, she still does not gain weight. Her weight has been a "plateau" for several months now. However, our CF team has been very supportive and seems to understand our struggle.

I feel a strong need to tell you that at this point it would be negligent for your son if you didn't protect him - CALL A LAWYER! If this so-called doctor is not with an accreditted CF center, then CALL one ASAP!

You are your son's only advocates, do ALL that you can from preventing this from happening again. And although I don't believe in filing lawsuits, I would definitely go forward with one against the doctor and Rebecca Taylor. Have you tried to contact any of their superiors? (i.e. head of the hospital) Have you tried researching this doctor's background and medical record? How much experience does he have with CF patients?

Please let us know how things are going and how we can help, if possible.

Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[anonymous]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

I am just curious. You said you are going to a new pulmo doctor. Are you taking your son to an accredited CF Center? If not, I would suggest you do. We tried a regular pulmo and he wasn't as nearly as good as the CF doctor at the CF center. The CF centers are trained to treat people with CF. Read more about it at www.cff.org.
Good luck. I hope everything works out for you.

 

[ejaffe]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

Thanks once again for everyones support.
I thought I would answer everyones questions. We are in the process of reporting the doctor to the medical examiners board. And yes we have talked to the caseworkers supervisor, and let me tell you she is totally useless. They do not talk like human beings, any time I would present them with rock solid facts to support our case, they both give the generic response "im not going to argue with you".
We have even talked to the head of the department for the county, but we don't know how far the corruption goes withen their system. Our lawer told us that they are the mafia out here. She also told us that NOBODY gets their kids back from them like we did.
We do have a new pulmonologist and he is wonderfull. I think he is one of the best in our state.
But no we haven't been to a CF center yet, that was something the old pulmonologist was going to set up for us but he never did. Just another one of our reasons for leaving him.
Today I will call the CF lawer like everyone suggested. Thank you everyone. We will keep you all posted.

 

[anonymous]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

If you have proof. You can make a call to your states abuse hotline, to turn in the fosterparents. This is done often, most are to get back at them because the parents blame them for their children being taken. Since this is NOT your case, I am telling you that this is your right to do so. Good luck.

 

[anonymous]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

Just another thought-

Since your son is mainly having digestive issues, he should also see a gastroenterologist. The advantage of having him seen at a CF clinic is that they have a nutritionist and a gastroenterologist. Our pulmonologist (who is great) will refer us to the gastro when Samantha has digestive or weight issues. We will also work closely with the nutritionist.

Also, a CF center has a social worker who works closely with the family. I believe that would have prevented a lot of this from happening to your son. Please go to an accredited center soon.

Maria (again)

 

[anonymous]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

Just want to add that I would get a lawyers approval before setting cameras up in your home. Since they are set up by yourselves, they may not carry merit in a court system. That would be dumping a lot of money into something that may not work.

 

[Mockingbird]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

I think I se what happened. It's the doctor... um, Dr. David thomas. i think what happened is his pride got hurt when you didn't follow his night feeding instructions . Even though you feeding your child yourself was probably much better for him (both physically and mentally; in my opinion, you made the right choice. =-) all Dr. thomas was concerned with is you didn't follow his instructions, so he called CPS. It didn't matter what happened from that point on, because CPS will always listen to the doctor before the parents. Trust me, you could have cured your baby of CF, and they still would have taken him away.

Now that you have a better doctor, though, things might get better. Just remember it doesn't matter how healthy your child is, they will NEVER listen to you. Make sure the new doctor is able to come to the next hearing, or at least bring as much documentation from him as you can. All Dr. Thomas has to do is tell the judge you didn't follow his instructions and everything could start all over again. Only if you have a doctor on your side will the courtlisten to you, and the more doctors the better.

I have an aunt who was accused of abusing her children and she had to go through much the same thing. In the end she won, though, so I hope the same goes for you. =-)

 

[julie]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

I just private messaged you but here it is again


Just a note,
although you are with a new pulmonologist, they are NOT trained to handle all the CF needs and problems that arise. I would urge you that you get your son the best treatment possible by getting him into a CF accredited care center. You can go to www.cff.org and type CF center in the search engine and they will pull up all the centers in your area. You can also call the CFF, they are SO extremely helpful.

This new pulmo. might be great and he might be a good doctor to have as a secondary in case the CF center can't see your son right away (someitmes appts. take 2-3 weeks) but I recommend that you get into a CF center. That way, heaven forbid if theis ever happens again or they try to take him, you have the support of an entire CF team of dieticians, doctors, nurses, Pulmonary function lab techs. and so on to support you; vice just one doctor-regardless of how good he is.

I am so enraged that this happened to you and I pray that your family finds the strength to pursue this situation in a court of law! I know there are MANY people on this site who would be willing to be contacted regarding their children with Cf and the care it took, in order to support you and your family. Just ask for names, email addresses of anyone who might be willing to submit a letter about the care of their CF child, their childs weight gaining problems and so on-you'd be surprised at how many people will assist you.

Take care

 

[daelwill]

RE: Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

I would urge you to contact the following lawyer... I'm not sure what exactly the work she does, but she has CF and does many different types of cases dealing with disabilities and espeically those with CF...

Call 1-800-949-4ADA. for Technical Assistance. BETH S. SUFIAN. 811 RUSK SUITE 712. HOUSTON, TEXAS 77002. TELEPHONE: 713-224-1166. Facsimile: 713-224-1161. LEGAL EXPERIENCE. Partner, Sufian & Passamano, Houston, Texas ... Beth Sufian, James Passamano and Suzanne Pattee, Advocacy Manual, A Clinician=s Guide to the Legal Rights ...
http://www.dlrp.org/html/Training/2004HR/sufian.html

If she can't do it she may be able to refer you to one that can... especially with your son getting sick and his g-tube placement getting infected and what not after just one weekend in the care of the foster parents. This was uncalled for and not necessary at all.... also you can file a complaint with the medical board as well against the first doctor... upon discovering your child has CF he should have referred you to a CF clinic immediately.

My prayers are with you and your family. Cf is hard enough to deal alone. blessings.

 

[daelwill]

RE: Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

One more suggestion would be to contact your state senator- the one in your state senate... and even contact the governors office... let them know everything that has happened.

Also, you can look into whether the nurse violated privacy by discussing things with Rebecca- I assume the state does not hold to the right of privacy once it invades yours.

Make sure every phone call, every doctor meeting is noted and documented.

Love to you and your family.
Daelynn

 

[anonymous]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

I am so sorry for what your son and your family have been forced to endure. You are all in my thoughts and prayers. What a beautiful child he is! I have a 14 yr. old daughter with CF. She was diagnosed with CF at the age of 11 yrs. and has always been "petite" for her age. I don't know what I would have done if we would have been accused of abusing her. My advice to you is to hang in there, contact the lawyer mentioned earlier and make sure you have documention on everything. Please keep us informed as to how everything is going.

 

[anonymous]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

This is terrible. But unfortunately it happens more often than we'd like to think. I know of a local doctor(peditrician )who has turned in two set of parents with CF kids for child abuse because he didn't think they were feeding them. I was in the hospital for 7 days with my very sick 3 month old for 'observation ( I later learned) I thought he was trying to find out what was wrong with my son. I asked him daily about CF? I had strong family history, he was malnorished, salty to kiss you name it. He kept saying no and I was relived because I knew what a terrible disease it was.
Terri

 

[texascfdad]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

I feel so bad for you. i had chills reading your story, imagining it was my child. i have a 15 month old with cf, and i am so glad he has such wonderfull doctors at his clinic. all i know is they would have to go through me and a 12 gauge to take my son. especially for something so obviously false as that. your son is so adorable. i pray for you and hope for the best.
the Lord is my light and my salvation, whom shall I fear? Psalms 27:1

 

[Lilith]

RE: Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

It's absolutely sickening what these people have done to your family. Though, I must admit, it's not that hard to believe. I can easily picture something like this happening...how sad! I agree with most of the people here, you should contact that lawyer immediately and get this behind you as quickly as possible. My thoughts are with you!! I wish you the best! Keep us posted, okay?

BTW, your son is sooooo cute!

 

[luke]

RE:Living or Dying with Cystic Fibrosis, The Parents Fight for Life, The State Enforces Death.

Ejaffe,

I was thinking about you the other day, what is the latest update?


luke