Re: DS and Hyrdocephalus Update Deanna

[Guest guest]

Deanna,

Thank you for your story. I feel the same way you did. Doctors seem

to think that you can " just get rid of it " when there is a problem

with your pregnancy and try again but they don't seem to consider the

moral and ethical issues involved. I know that I made the right

choice because, like you, now I will at least get to hold the baby

and say goodbye if that is what is meant to be, plus I did not

endanger the life of his brother. If he does make it, I will have

quite a few words for the doctors!

I am so sorry for your loss, but remember that you did everything you

could for your children.

B.

> ,

> I thought I would respond to your post. I also had a very

complicated

> twin pregnancy. My twins were

momo's...monochorionic/monoamniotic...this is less

> than 1 in 50,000 twin pregnancies. I was given the option at 15

weeks to

> terminate because there was only a 50/50 chance of even delivering

one alive. I

> refused because I was not willing to give up on them. At 16 weeks,

I found out

> I had a 1:16 chance for DS based on the AFP. I was obviously

crushed, but

> after it sank in I was ok. I was again given the option to

terminate for the

> genetic factors, but declined again. I even refused the amnio

because the risks to

> the tangled mess of babies and cords was far to risky just to tell

me if they

> did or did not have DS. At 20 weeks, Jordan developed hydrops. It

started

> off in his abdomen and later moved to his chest and scalp. I was

told he would

> not live past 23 weeks. The Dr's were very cold and negative, but I

refused

> to give up hope. I was told I should tie off Jordan's cord because

might

> die also. I could not bring myself to sacrifice one child for the

other for

> what if's. I did a lot of research and sought out several DR's

across the

> country to perform fetal surgery for Jordan. I wanted to try

thoracoamniotic

> shunting....but all refused stating he was already fatal at a stage

4 hydrops. I

> was prompted again to tie off his cord. It seemed as if the medical

community

> felt I should give up on this little boy, and I could not. I put my

faith in

> God...and only God....since everyone else had already basically

written him off.

> I prayed that God at least give me the chance to see him and touch

him for

> one day. I wanted both boys to know how much I loved them and

wanted them.

> Jordan's hydrops did begin to resolve somewhat around 27 weeks. The

fluid remained

> only around his right lung. I saw this as a glimmer of hope and

answer to my

> prayers. My DR said not to remain hopeful, because he would still

die. I did

> not want to believe him.

> I did make it to 29 weeks, but we had to do a crash C/S because

> had stopped moving. He was still alive, just probably losing oxygen

due to cord

> compression. was born first weighing in at 1 lb 14 oz, 12 in

long.

> Jordan followed a minute later weighing 2 lb 6 oz, 14 in long. he

was a full code

> in the delivery room. He took 6 minutes to fully revive. He had

chest

> compressions, intubation/bagging, epinephrine, and 40 cc's of fluid

tapped off of his

> right lung. my DR knew how much I had fought for these two babies.

i think

> they had started to grow on him also because i refused to give up

on them. he

> made the nurses bring them both over to me after they were

stabilized so i could

> see them, touch them, and tell them i loved them. i will never

forget that

> moment for as long as i live. the nurses and NICU people grumbled

over this, but

> he knew i needed to see them.

> Jordan worked very hard over the next few days. He received

multiple

> chest tubes, nitric, epi, dopa, and oscillating vent. His lungs

could not

> tolerate any force to them and he had holes blown through them like

swiss cheese. I

> went every day to see them both. Jordan did get worse in his

second week of

> life. His sats dropped to the 70's on the vent and his BP dropped

lower and

> lower. I knew he could not stay any more. He had given me the most

of himself

> that he could. I let them extubate him on his 13th day. He passed

away in my

> arms. This is very hard for me to relive all of this in detail

and I am

> crying as I write this to you.

> My point to this is....i NEVER gave up hope when everyone else

did. if i

> had terminated one or both of them I would have lost many memories

that i now

> cherish today. that hope and faith i held on to gave me 13 days

with my son I

> might not otherwise have been able to see, touch, kiss, and hold as

I said

> goodbye. my baby did not give up either. I believe more in the

human spirit and

> in faith than in medicine when it comes to ethical decisions.

> No one knows how long they will have their children. Some die

before

> birth, some during, and some after birth. But I believe we should

never give up

> hope. A mom is the most important person in a child's life....they

need us and

> we need them. I pray that your sweet baby will surprise these no-

sayers. Do

> not give up hope. Just try and turn a deaf ear to the negativity of

the medical

> profession. These babies are so much stronger than people give them

credit

> for. I will be thinking about you. Please keep us posted.

>

> Deanna mom to

> Alyssa 11 (ADHD)

> 9

> Jarod 4 1/2 (ODD/ADHD)

> 2 (DS)

> ~i~Jordan (DS) 1/20/03-2/2/03