Alexander's Heart -- SAD BIRTH ANNOUNCEMENT (LONG)

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Mary Anne Walters

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Nov 8, 1991, 11:04:34 AM11/8/91
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This is a birth announcement that does NOT have a happy ending. Be
warned and hit N now if you don't want to read this.

My husband and I were very excited to find out I was pregnant. We had
been trying to get pregnant for about a year, and weren't having much
luck on our own so we had just begun to see an expert in fertility
when I got pregnant. I had a few problems early on, with a low
progesterone level. That was treated with medicine, and things looked
good. I started to gain a bit too much weight too quickly, and was
diagnosed with gestational diabetes at about the 27th week. The Dr.
put me on a strict no sugar diet, designed to keep my blood sugar
level steady during the day. I followed the diet pretty well, and
gained only about 6 pounds in the last month and 1/2. I was due on
Halloween and looking forward to the day with joy and the fears of a
first-time mother-to-be.

At my last checkup with the Dr. a week before my due date I was
already 2 cm. dilated. On October 26th I noticed I was leaking a
little fluid. I called the advice line with my HMO and we talked
about it. I really hadn't had but one serious contraction but it
lasted for about a minute and was very strong. We headed to the
hospital, and I was having pretty painful contractions about 5 minutes
apart and was obviously in the dreaded back labor.

I got to the hospital and had two contractions about a minute apart
while checking in. I went up in the wheelchair, and right into a
labor room. The Dr. seemed skeptical about my labor since I really
hadn't had regular contractions, but I was already 5 to 6 cm. dilated
when she examined me and the contractions were so painful I got an
epidural right away. At that point I all but fell asleep for 2 hours.
I was so restful, that when she woke me up to examine me, and told me
I was at 10 cm. and it was time to push I just wanted to drop back off
to sleep for another hour or so.

I pushed for about a hour in the labor room, and then we moved to the
delivery room, where I pushed for almost another hour. My husband did
everything he could as my labor coach, despite his previous worries
that he would have trouble seeing me in pain -- with the epidural, the
whole labor experience was just great. I felt on top of the world and
happy to be finally about to meet my child. After nine months of
anticipation at 1:09 AM, just before the start of Daylight savings
time, Alexander James Walters was born. He was 10 lbs. 2 ozs. of baby
boy and he was truly beautiful. He was a little hypoglycemic and
needed a bit of sugar because of the diabetes I had, but his APGARS
were 8 and 9 so we thought everything was just perfect. They kept him
in the nursery to watch his sugar so my husband came with me to the
room and then went home. The nurse brought Alexander to me twice in
the night, and I tried to nurse him but all he would do was sit with
my nipple in his mouth and not latch on. Other than that, he still
looked fine except for a little blueish tinge to his fingernails.

The next morning when I woke up, I had breakfast, and waited for them
to bring the baby to me. Instead, a Dr. came in to say there was a
little murmur in Alexander's heart and they wanted to check him out.
At this point, it was devastating, but we had heard there were many
cases where a duct in the fetus (called the Payton Ductus
arterio-something [PDA] I think, although the spelling may not be
correct) that should close off after birth doesn't close, and that is
what can cause a murmur but it is treated with medicine and usually a
relatively minor thing. They looked at him a little closer, did
x-rays, and found he had a severely stunted right ventricle and an all
but non-functional valve there. What this meant was that the blood was
having a hard time getting thru to his lungs, and that it wasn't
getting oxygenated. There was a small hole in his upper heart that
allowed blood to bypass the right side and for the oxygenated and
un-oxygenated blood to mix. The very valve that causes murmurs in
some babies was what was keeping Alexander's blood oxygenated. They
worked to keep the PDA open with medicine and keep his oxygen
saturation level up till they could do some further procedures.

The first thing they did was a cardiac catheterization. They took a
catheter, with a dye bomb on the end and released it into Alexander's
heart. Then they took pictures of it. This gave them a good idea of
what had to be done. We were told he had to have surgery and without
it he would die for sure. They intended to put a patch between the
right atrium and the right ventricle, to allow the blood to reach the
lungs. They would keep the PDA open with medicine to offer the
maximum blood flow to the lungs, while encouraging the right ventricle
to grow. The Drs. felt this offered Alexander the best chance of
having a close-to-normal heart and therefore a close-to-normal life.

The surgery was not without risks, but Alexander made it thru pretty
well. There were a few unforeseen complications, such as the fact
that he was so plumped up with fluid they couldn't close his chest
yet, and just put a large bandage over him. He seemed to do well for
the 1st 24 hours (well, as well as can be expected for a two-day old
who just had open heart surgery) and then we had a scare -- the
medicine keeping his PDA open was not working and the ductus seemed to
be closing. We were warned of this, and knew a second surgery to make
the temporary PDA a permanent thing was a possibility. They were
rushing him down for surgery and the outlook wasn't good. We waited,
watching the minutes tick by.

The Dr. came up, with a big smile on his face and said the PDA had
popped open all on its own and for now, he was happy with that. He
opted not to do the surgery to place the permanent shunt in, but again
we knew there were still many risky days ahead.

Alexander had two good days, where his oxygen saturation levels stayed
in the mid 70s to 80s. This is more than enough to avoid brain
damage. And his PDA seemed to be keeping open pretty well, although
he was requiring a lot of medicine to keep it open, and a lot of extra
fluid to keep his blood pressure up. We were able to stay by his
bedside for much of the time, and even got to perform little tasks
like helping to change his diaper, and rub lotion into his skin to
keep him soft and supple. We also got to put cool washcloths on his
head when his temperature went up. These little things were far from
the usual parenting tasks you look forward to when you have a new
baby, but to do *something*, *ANYTHING* at all for him made us both
feel less useless.

Towards the end of the 2nd good day, things took a turn for the worst.
Alexander's oxygen saturation levels dropped into the 60s and could
only be coaxed up with major doses of very potent medicines. They
worked over him for hours, trying to stabilize his condition, and
planning to operate to make the PDA permanent again. He was so
unstable that we could read between the lines enough to know that the
Dr. was very worried about the chances of Alexander pulling thru this
one. There were the further risks of brain damage from the low oxygen
saturation levels, as well as possible damage to other organs. Once
again, we sat and waited for the news, feeling helpless and hopeless,
while trying to cling to every last shred of faith we could muster.

The Dr.'s assistant came up a couple of hours later. He told us that
although the procedure went ok, and the shunt was in, the Dr. was
having a very difficult time re-establishing a heart rhythm. They
were giving Alexander shots of pure adrenaline directly into his
heart, and the Dr. was doing everything he could but the outlook was
very bleak. Within 15 minutes the Dr. came back up and said "I'm
sorry. He just couldn't take all the insults to his heart." and
Alexander, who was my heart as well as my child, was gone.

We asked that he be cleaned up and that we be allowed to hold him one
last time. They took us down to the operating area, and there he was,
lying on a huge bed, swaddled in a blanket with just his sweet little
face showing. He was still so swollen from the fluids but he had no
tubes, no IVs and nothing else blocking our view. There was a rocking
chair there and I sat and rocked him for a minute or two, crying and
rocking and wishing it had turned out differently, while trying to
tell myself this was better for him -- that it was harder for us to
lose him than it was for him to slip away out of this world of pain (I
do know he felt nothing once the surgery was done and he was kept
paralyzed with drugs, but I can't help but worry he knew what was
happening and that it wasn't supposed to be like this). The nurse cut
a lock of his hair for me, and I let my husband put him back on the
bed and we left, numb on the surface, but in screaming agony inside.

We signed papers to allow an autopsy, as well as for organ donation --
the autopsy may help the Drs. learn something in order to be able to
help some other child in the future, and as strange as it may seem,
there is still a possibility that not only could his corneas help but
that the working heart valves that Alexander did have may be used to
save another child, and to save another set of parents from this
agony. {We got a letter from the Eye Bank two days after Alexander died
letting us know that his eyes had saved two people from blindness}.

The Drs. all told us there was nothing we did to cause this, and
nothing could have been done to prevent it -- the heart is fully
formed, with all the structure it will have by the 8th week of
pregnancy. It seems 1% of babies have some kind of heart problem, but
rarely are they as severe as the problems with Alexander's heart.

I have read misc.kids throughout my pregnancy, and gained much good
advice. I only hope someday I can use that knowledge I gained. It is
nearly impossible to believe there could ever be another child in our
lives. We are also fighting with the knowledge that having had one
child with such a severe heart problem, our chances of having another
are increased ever so slightly. Right now we only want the pain to
end. Not true -- what we want is for it to all have turned out
differently, and for our baby to be home with us now. That can never
be.

We ask that you say a prayer for Alexander to speed him on his way to
heaven. We love him still, very much. It has helped to put it all
down in black and white.


--
--Mary Anne

"In literature, as in love, we are astonished at what is chosen by others"
-- Andre Maurois

Kate Dudding

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Nov 12, 1991, 9:31:43 AM11/12/91
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I tried email 2 different ways, but both bounced.

I was so very sorry to read of Alexander's death. I'm still blinking
away the tears.

When you wrote "We are also fighting with the knowledge that having had one


child with such a severe heart problem, our chances of having another

are increased ever so slightly.", I was reminded of the following.

A friend of mine got a divorce several years ago. During that time, she
told me she learned not to make any decisions that she didn't absolutely
have to, until she felt more emotionally stable. She subsequently remarried
and then had 2 miscarriages. When I saw her the day after the second one,
she said she didn't know if she had the emotional strength to try again.
So I reminded her that she didn't have to make that decision right then.
She later told me that she appreciated that reminder. (And she now has a son.)

Despite the fact that my parents are dead and that I had a tubal pregnancy,
I can't imagine the pain you are in, and I don't know if the above advice
will help in any way. I almost deleted it, in case I was blundering and it
would make you feel worse. If it has, I`m extremely sorry. But I decided
to include it in case it might help a tiny bit.

Kate Dudding dud...@crd.ge.com
GE Corporate Research and Development
Bldg. KW, Room C315
PO Box 8, Schenectady, NY 12301 (518) 387-7164

Laurie Hafner

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Nov 13, 1991, 10:28:00 AM11/13/91
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In article <24...@crdgw1.crd.ge.com>, dud...@sallyride.crd.ge.com (Kate Dudding) writes...

>When you wrote "We are also fighting with the knowledge that having had one
>child with such a severe heart problem, our chances of having another
>are increased ever so slightly.", I was reminded of the following.
>

>told me she learned not to make any decisions that she didn't absolutely
>have to, until she felt more emotionally stable. She subsequently remarried

My email to Mary Anne bounced also. But, Kate's point here is so important.
Our second baby was born prematurely and was quite ill for awhile. The
experience was very difficult (understatement - I was an emotional wreck) and
I wanted to have my tubes tied immediately. I did not want to have to go
through this again. Something inside me made me hesitate and I'm glad now
that I did. Since that time, I have become educated as to the risks involved
in having another child and am now much more able to think clearly about
all of the pros and cons.

Mary Anne's post was extremely difficult for me to read and I will continue
to keep her in my thoughts and prayers. No one should have to go through the
pain of losing a child.

Laurie Hafner, Weeg Computing Center, University of Iowa, Iowa City, Iowa 52242
lha...@vaxa.weeg.uiowa.edu

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