Saturday, December 08, 2007

Regrets That Haunt Me.

Yesterday I read this story and it made me ask all those questions I periodically ask myself about Hope's birth and death, which are:

*What if I had ignored the doomsday scenario presented by my OB and just waited for nature to take its course? Maybe she would have hung out in there until at least 24 weeks. Bubba stayed put for a week even though I was 8 cm dilated and 100 percent effaced, and probably would have stayed in longer with the help of tocolytics but I refused them because of my feeling that he was better off outside of my body than in it at that point.

*What if I had DEMANDED tocolytics with Hope to stop my contractions and then just waited?

Both of these questions can be boiled down to one question: What if I hadn't given up? What I know now that I didn't know then is that doing something, anything, to try to save her, no matter how futile, would have at least assuaged the massive guilt I felt (feel) about her death. This is something my doctors didn't understand either, as they pushed me for a pitocin drip to just "get the inevitable over with." If I had done the two things mentioned above, I would at least have been able to say that I tried everything. As it is, I blindly followed my high-risk, cutting-edge university doctor's recommendations that I just give up. And just giving up is hard to live with after your baby dies.

For the most part, I live with these questions by reminding myself that I did the best I could at the time...but I'm still disappointed in myself, and stories like the one I linked to today bring it all back.

Next June it will be five years since I had Hope, and I know there are still parts of her life and death that are affecting me and that I haven't dealt with because I just don't want to feel the pain. Five years later, and holidays are still bittersweet because I think that I should have two kids decorating the Christmas tree. There hasn't been a Christmas yet when I don't think about that Christmas after she died, and the emptiness of her absence when she should have been there in her First Christmas outfit.

Five years on, and I still haven't addressed the massive anger I feel toward the medical people who were supposed to be caring for me and my baby. I know I need to delve into it and disassemble it in order to get it out of me, but I also know how much it will hurt and I just can't bring myself to go there. And that feels, in a way, like just another way I'm giving up on my daughter.

I know in my heart that I would never have chosen for things to turn out the way they did, and that if anyone else told me my own story I would hold them completely blameless and would shower them with compassion. It's just hard to do that for myself. Why is it so much easier to beat ourselves up than to support ourselves with love?

Here, for future reference in case the story I linked to comes down, is the story that prompted this entry.

It was to be the one and only cuddle Carolyn Isbister would have with her tiny, premature daughter.

Rachael had been born minutes before - weighing a mere 20oz - and had only minutes to live. Her heart was beating once every ten seconds and she was not breathing.

As doctors gave up, Miss Isbister lifted her baby out of her hospital blanket and placed her on her chest.

She said: "I didn't want her to die being cold. So I lifted her out of her blanket and put her against my skin to warm her up. Her feet were so cold.

"It was the only cuddle I was going to have with her, so I wanted to remember the moment." Then something remarkable happened. The warmth of her mother's skin kickstarted Rachael's heart into beating properly, which allowed her to take little breaths of her own.

Miss Isbister said: "We couldn't believe it - and neither could the doctors. She let out a tiny cry.

"The doctors came in and said there was still no hope - but I wasn't letting go of her. We had her blessed by the hospital chaplain, and waited for her to slip away.

"But she still hung on. And then amazingly the pink colour began to return to her cheeks.

"She literally was turning from grey to pink before our eyes, and she began to warm up too."

Four months later, Rachael was allowed home weighing 8lb - the same as a newborn baby - and she has a healthy appetite.

Miss Isbister, a 36-year- old chemist from West Lothian, said: "Rachael has been such a little fighter - it is a miracle that she is here at all. When she was born the doctors told us that she would die within 20 minutes. But that one precious cuddle saved her life. I'll never forget it."

Miss Isbister and her partner David Elliott, 35, an electronics engineer, were thrilled when she became pregnant.

At the 20-week scan at the Edinburgh Royal Infirmary, doctors told them she was carrying a girl and they decided to name her Rachael.

But at 24 weeks a womb infection led to premature labour.

Miss Isbister, who also has two children Samuel, 10, and Kirsten, eight, from a previous marriage, said: "We were terrified we were going to lose her. I had suffered three miscarriages before, so we didn't think there was much hope." When Rachael was born she was grey and lifeless.

"The doctor just took one look at her and said no," said Miss Isbister.

"They didn't even try to help her with her breathing as they said it would just prolong her dying. Everyone just gave up on her."

Ian Laing, a consultant neonatologist at the hospital, said: "All the signs were that the little one was not going to make it and we took the decision to let mum have a cuddle as it was all we could do.

"Two hours later the wee thing was crying. This is indeed a miracle baby and I have seen nothing like it in my 27 years of practice. I have not the slightest doubt that mother's love saved her daughter."

Rachael was moved on to a ventilator where she continued to make steady progress.

Miss Isbister said: "The doctors said that she had proved she was a fighter and that she now deserved some intensive care as there was some hope.

"She had done it all on her own - without any medical intervention or drugs.

"She had clung on to life - and it was all because of that cuddle. It had warmed up her body enough for her to start fighting." Because Rachel had suffered from a lack of oxygen doctors said there was a high risk of damage to her brain. But a scan showed no evidence of any problems.

As the days passed, Rachael began to gain in strength and put on weight. She had laser treatment to save her sight because the blood vessels had not had a chance to develop properly in the womb. And she also had six blood transfusions.

"We couldn't believe that she was doing so well," her mother said.

"Her heart rate and breathing would suddenly sometimes drop without warning, but she just got stronger and stronger."

After five weeks she was taken off a ventilator and Miss Isbister was able to breastfeed her.

Then, after four months, the couple were allowed to take her home - a day they thought they would never see.

Miss Isbister said: "She is doing so well. When we finally brought her home, the doctors told us that she was a remarkable little girl.

"And most of all, she just loves her cuddles. She will sleep for hours, just curled into my chest.

"It was that first cuddle which saved her life - and I'm just so glad I trusted my instinct and picked her up when I did.

"Otherwise she wouldn't be here today."

7 comments:

Anonymous said...

Oh Susan, the what ifs will kill us in the end. Not that I anywhere near what you experienced, but the loss you suffered was inhuman and so great and I wish we could turn back the clock and change things. You are very strong and very loving and this sounds mushy and all but I send you peace and love. I will always remember Hope too.

thrice said...

Oh sweetie, I don't know what to say. Maybe I should play it safe and shut up, but just know that tocolytics don't always work, especially if you were already dilating. When I was 33 weeks with the twins and 4 cm dilated, tocolytics weren't even an option.

Five years ago they didn't have the advances they have now. I can't begin to try to understand the pain. I know that I would question everything all the time. I'm so sorry.

Nicole said...

I am so sorry that you are feeling this way. And you are right, it's a lot easier to be compassionate with others than ourselves. You never gave up. Your doctor may have, but you didn't. Please don't give up on having compassion for yourself.

Aurelia said...

Firstly the woman and baby in that story are rare, beyond incredibly rare.

Even if Hope had made it a little further you have no guarantees that she would've been okay, and the price she would have paid would have been too much. She died surrounded by your love and warmth and never had to know pain or suffering.

You did the best you could, forgive yourself.

charmedgirl said...

holy sh*t, depressionista.
i almost can't type due to my innards hanging out all over the keyboard.

i, too, have many regrets about the death of my daughter...most of which are my direct fault. lying to the midwife, even. but even considering that, i know there is no way to know anything about what caused her death. and there is no way for any of us to know if changing anything would have made for a better (or worse, if that's possible) outcome.

even i have to realize that we now have to choose what we believe, and know that whether we choose the more painful or the more comforting, in the end it's still the same. WE DON'T KNOW, and NEVER will.

but...i do also know that the pain of wondering if we could have prevented it (in a very real sense- like, "i should have demanded the glucose tolerance test and avoided eating like a damn hog," not like, "my body failed")...

sucks ass in hell.

Cass said...

"what-ifs" are amazing at haunting us and keeping us from appreciating the "what-dids"...

Tingle said...

I both love and hate those stories. I think it's great that someone else had a happy outcome and that their "miracle" happened. One thing about losing a baby - you wish it would never happen again to anyone else in the world because it's so hard. But it does happen, every day.

So, I don't like those stories because I want to know why things worked out for those people and not for me. Are they better than me? More deserving?

For me, I didn't know there was an option to "giving up." No one told me there was any hope at all. And then you hear of babies surviving who were born at 24 weeks or even earlier, and it makes you wonder, what if? Like you said, those stories always bring it all back.

Every day, every get-together with family, every holiday, I miss my son and feel cheated that he's not here with us to be a part of our family. Sometimes it makes it even harder when I feel like I'm the only one who remembers, especially on special days and holidays.

I always remember what you say, that we did the best we could with what we knew at the time. I still believe that. But the guilt hasn't gone away, maybe never will. The one person my baby had to rely on while he was in my body was me, and I let him down and I'll always feel responsible for that.