Saturday, September 30, 2006


The other day I went to the funeral of my sister-in-law's mother, an 80 year old woman who had suffered from Altzheimer's disease for several years. She had shut down almost completely about a month ago, no longer eating or speaking, and by the time death came it was a bit of a relief.

At the luncheon after the funeral, a brother of the deceased approached me and introduced himself. He was a dentist and had heard that I was a neonatologist. He told me of a son that he and his wife had 50 years ago who was born at "eight months" along. The baby had breathing problems and died at the age of one day, and the dentist wanted to know if there had been any progress made in the treatment of such babies and diseases.

I told him that yes, tremendous advances had been made, and that a baby like his if born today would likely be a relatively easy case. I told him about the advances made with mechanical ventilation of babies in the late 1960's and 1970's, and of the advent of widespread use of artificial surfactant in the early 1990's.

Although he seemed pleased to hear about the advances, he had a somewhat wistful expression on his face, and I said to him,"You never forget about your baby, do you?" He seemed relieved to have the sentiment acknowledged and started talking more about his dead baby boy. He told me that his son just couldn't seem to catch his breath, and he was reminded of it when he saw his Altzheimer's impaired sister take her last breaths. After our conversation he thanked me and we went our separate ways.

Fifty years ago a small baby lived for one day, and every single day since then his father must have thought of him. There is, I think, no stronger attachment than that of a parent for his or her child.


Blogger karrvakarela said...

So true.

Thank you for sharing this.

5:56 PM  
Blogger Flea said...

I can't imagine how a dad must feel to hear that his baby would have lived if he were born today.



7:35 PM  
Blogger Fat Doctor said...

Beautifully put. Thanks.

8:46 PM  
Anonymous frectis said...

"You never forget about your baby, do you?"

No, you don't. I was present in the days before my grandmother died of cancer at home. One morning close to her last, she was in bed staring off somewhere no one else could see with a bright smile on her face. My mom asked why she was smiling. She replied, "I've finally decided on two names."
She didn't tell us what they were and they were among the last words she ever said. But we assume they are for the two babies she lost in pregnancy more than 50 years ago. My grandfather broke down sobbing hearing this.

12:41 AM  
Blogger La Lubu said...

I can't imagine how a dad must feel to hear that his baby would have lived if he were born today.

My older brother died in 1966; he was born at seven months, and lived eight hours. I was born in 1967.

My daughter was born at 25 weeks in 1999. Her NICU experience was hard on my father, especially. See, my mother never got to see her son close up---just from across the room without her glasses on. My father drove his body back home to be buried, the casket resting on the back seat. (That, I can't imagine.) He was already on the path to alcoholism, but that pretty much sealed the deal.

It's not just the medical advances that save more lives that matter; it's also the way the grieving process is handled in the hospital for the lives that can't be saved. Parents now get to hold their babies and say goodbye.

10:48 AM  
Blogger jennifer said...

Hi Doc!

What a lovely and thoughtful post. And I'm going to raise a point here that also touches upon your post about MEMORY KEEPERS DAUGHTER. In your reply to Michelle, you clarified a point--that children with DS have no hope of achieving normal intelligence.

Bear with me here--if you've just finished the book, then you are aware that just thirty years ago doctors advised parents to put our children in institutions. We were told they would never walk, never talk. We were told it was hopeless. And yet, here we are. So perhaps you will understand my honoring the tradition of doubting what is told to me about my son. I will let him tell me himself.

And the reason this applies to this current post is this: the advances made in medicine today, in your specialty, must seem like science fiction to that father. That in such a short time, so much has changed. And we know so much more, now. His loss is still fresh, his hope is gone and has been for fifty years, yet he must think, as you surmise, what if?

As long as my child is alive I will hope for him. I will dream for him. I will envision a future where we understand his sort of intelligence better; where we as a world help him and others achieve, rather than set limits. Because in the end, that kind of knowledge and acceptence isn't just good for him, it's good for us all. Understanding my son may help better understand Alzheimer's, leukemia, breast cancer (women with DS have a lower incidence of it, why is that?) And more--a better understanding of the way my son learns leads to a better understanding of the way all children learn, and what could be wrong with that?

In an earlier post someone questioned what kind of research has been done on kids with DS and the upper limits of intelligence testing...with the conclusion that there have been very few. And also, the point was raised that as a population, people with DS are relatively understudied. I would like you to conisder these thoughts before telling a parent, any parent, what their child is not capable of.

Your posts, as usual, are thoughtful and a joy to read. I have a bit of anger toward the medical people, and the others I encountered, who gave me wrong information, or information clouded with personal judgements, which I later found, on my own, to be untrue at best, and cruel at worst. I do not mean for any of this to come across as antagonistic toward you; again, thank you for asking the questions, thank you for entertaining the answers.

11:19 AM  
Blogger Lori said...

Almost three years ago, my husband and I lost our twin son and daughter, Joseph and Molly, when they were born at only 23 weeks. Two pieces of your post touched me. The first being of course the tremendous impact a child can have on your life even when they are only here for a moment in time. Our son and daughter both died in our arms not long after birth, but their little lives continue to bless us in so many ways. I miss them every single day, and carry them as close in my heart as I did in my arms for that one October day.

The second piece that touched me is the feeling of longing and regret that I know that father felt upon hearing that today his son would have very likely lived. There is nothing he could have done at the time, but every parent who loses a child will forever play in their mind all of the ways they wish things could have been different. I suffer those same feelings when I hear of survivors born at 23 weeks. We were not given the option of resuscitation for our babies. We were very clearly told that viability was almost non-existant prior to 24 weeks. We sadly accepted the realities of our babies limitations, and the limitations of medicine, and did everything we could to surround our babies brief lives with complete and total unconditional love. Still, it isn't easy for me to read perspectives like yours regarding micropreemies and wonder how things might have been different if our babies had been born in a different time and place.

Thank you for sharing this and for doing your small part to educate the rest of the world that no matter how briefly you hold a child in your arms, the love and the pain of loss runs very, very deep.

2:47 PM  
Anonymous Silver said...

I had a little brother who was born, I guess after about 36 weeks gestation, in the late 70ies. He died after three days. I often think about how he would probably have lived with surfactant.

I almost went into neonatology because of him - thankfully I noticed in time that it was the wrong motivation. It's still a specialty close to my heart, and I enjoy reading your blog a lot. :)

3:28 PM  
Blogger neonataldoc said...

Thanks for all the nice compliments. It's always good to hear someone say they enjoyed your post. Also, thanks for the poignant anecdotes shared.

Laluba, it's good to hear from you again; I wondered what had become of you.

Jennifer, you're right, we don't really know what will become of the next generation of kids with Down syndrome. Here's hoping they're happy, whether their IQ is normal or not.

8:08 PM  
Blogger jennifer said...

I hope so, too. You're a peach, doc. And good point about the on-the-spot dx in MEMORY KEEPER. I plan to bring up that point when we discuss the book at book club. Of course I'll attribute it to you.

9:40 PM  
Anonymous Kris said...

This is the post that I might c/p and fold into a little bitty square to put in my wallet to pull out and read before I become some old and grumpy labor nurse (Thankfully, neither of the nurses that attended the births of my 33 and 35 weekers were that, they were completely awesome). I'm about to start preceptorship in labor/delivery in a few weeks and this is just what is lacking in our classroom teachings.

Thank you.

12:34 AM  
Blogger T. Comfyshoes said...

I really appreciate you writing this - it puts my own life into perspective. I was born in 1977, at a bit under 8 months, I think.

I lived (obviously), but it was a scary time for my parents because I had surfactant problems.

To think that if I'd been born in the 1990s it might not even have been a big deal. Wow!

4:11 PM  
Blogger Jordan said...

My father died when I was 8 years old. For the next 20 or so years I walked the earth confident. If something happened to me then so be it. Then I met my wife. I found that no matter how hard I tried I now feared for her well being. For her life. My son is now 2 years old. Can I even explain the horrendous fear I have that anything will ever happened to him? I don't need to...the parents out there understand.

9:27 PM  
Anonymous Myssi said...

Fifty years and some months ago, my oldest brother was born at 32 weeks gestation. Forty-six years and some months ago, my middle brother was born at 34 weeks gestation. I think of them both as walking, talking miracles and wonder if fighting to live is what made them the stubborn so and so's they are today.
Thanks for what you do, Doc. :-)

11:26 AM  
Anonymous Anonymous said...

In 1922, my great, great aunt a talented artist died of childbed fever 14 days after her son died from a cord incident. That tragedy was so strong, it was passed down through all these generations of my family.

1:30 PM  
Blogger Zoe Brain said...

My son was born 4 weeks premature, back in 2001.

He's now 5, healthy and happy.

I can't have any more children, a medical condition sterilised me about 18 months ago, and since then I've had to have extensive reconstructive surgery.

But after reading this, I'm reminded once more of how blessed I've been, and my heart goes out to those parents who have lost children.

Hugs to them, Zoe

11:15 PM  
Anonymous Anon824 said...

My son was born 8 weeks early in 1982. We knew of his many problems while he was still in the womb . . . renal insufficiency, likely heart defects. So, when the delivery nurse shouted out my name and the neonatologist said 'he's breathing on his own' I could not believe he had survived the C section and he was really alive. From assuming he would not live at all, to hearing that he was breathing . . . talk about a journey of a thousand miles taken in a single step. Now, in an instant, he HAD to live, he just HAD to. Whatever could be done had to be done. The thought that he would die cut me in half. Up and down that day . . finally right before I left to go home the doc told me he had no renal function and could not survive. I went home and laid down on the floor and bawled. I prayed and offered anything just to let him live. The only reason I didnt offer my soul to the devil was because I didnt think of it.

My son is 24 now. Sure, he has health problems, but he is smart and funny, loves movies and art, and plays the piano and writes music.

I've learned more about life from him than he has learned from me.

4:26 PM  
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1:30 AM  

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