Thursday, April 13, 2006

Talk

We had a new baby born at 24 weeks yesterday. Mother came in and shortly after arrival had an emergency caesarean section, so we were not able to talk to her before delivery. In the afternoon, after the baby had stabilized a bit, and mother had time to awaken from her anesthetic, I went to her room to give her"the talk". She had a few relatives with her at the time. I asked her if it was okay to speak in front of them, and she said yes.

I told her that her baby was born 15 to 16 weeks early and that every organ, every system of his body was immature. The system that first gets our attention is the lungs; we had to put her baby on a ventilator, and he would likely be on it for weeks to months. I told her about the honeymoon period, how the baby's lungs might improve the first few days, but at the end of the first week worsen. We talked about the baby's immature stomach and intestines, and that it would likely be three to five weeks before he was on full feedings and we could get the IV out. I told her about the immature brain and the chance of bleeding into the brain. Fortunately, the majority of babies even this premature don't have major bleeds, but it's still a significant risk. We discussed the immature eyes, the possibility of blindness, and the increased chances of his needing glasses. We talked about the increased risk of infection in these tiny babies with decreased defenses.

Finally, I told her the chances of survival at 24 weeks is about 57%, perhaps a little better for her son because he had already made it a few hours. Since some of our parents don't understand percentages, I explained that meant a little more than one of every two survives. If the baby survived, he had a 25% to 50% chance of having a significant handicap.

I didn't tell mother about the desaturation episodes that would frequently occur - times when the baby's blood oxygen level falls spontaneously or with the slightest amount of handling. I didn't tell her about the worries she would have over big and little things; about the good days and bad days he would have; about the bother that pumping her breasts would be when she wanted just to nurse a normal baby; about the unknowns there would be of his condition; but most of all, about the huge emotional roller coaster that her life would be the next three months. Even if I did tell her, though, I'm not sure she could really grasp the meaning of it until she experienced it.

At the beginning of our conversation, Mom had seemed a little on edge. By the end of it, she was weeping, and I was glad her relatives were there for support. Like most people, I don't like making people cry, but I guess it's a trade-off for being honest with them.

11 Comments:

Blogger Dream Mom said...

You did the right thing, but you know that already. You can't give all of that other information, because it would just be overwhelming and it wouldn't serve any real purpose. She'll learn the rest as she goes and she can always ask questions along the way.

I feel sorry for these women and their babies. Life shouldn't be so hard sometimes; it's supposed to be a time of celebration and sometimes it just isn't. It's kind of like going to a wedding and when you get there, it's a funeral. You just don't expect it.

9:32 PM  
Blogger Flea said...

ND, do you give a version of the same talk numerous times? The oncologists have perfected this art, as they know that parents often cannot hear what you're saying after the waves of anxiety start crashing.

From the questions I've received the next day, it's clear that repetition is called for.

best,

Flea

5:14 AM  
Blogger That Girl said...

Hugs - you know you did the right thing. If it's any consolation, although knowing how sick my child was made me FEEL worse, I could cry equally as much over, say, dropping something on the floor - that hormone hammer is indiscriminate.

So I dont think you get to take credit for *making* someone cry, think of it as giving them permission to express themselves.

6:41 AM  
Anonymous Anonymous said...

I think when we start feeling comfortable giving this talk we're in trouble.

Cherubsinthelandoflucifer.com

9:09 AM  
Blogger star firstbaseman said...

And thank goodness you are honest with her - probably the only, best gift you can give her.

11:59 AM  
Blogger neonataldoc said...

Thanks, everyone, for the great comments. DM, great second paragraph in your comment. I feel exactly the same way. Flea, I do try to remember that they need it repeated over and over; parts of it I do repeat, but I could do better. Thanks, that girl. I like to think that I don't make them cry, their circumstances do. Cherubs, I agree completely. Thanks, ball player.

10:00 AM  
Blogger neon88 said...

I give a similar talk. But this is only the first part. After I know I have gotten their attention (and you would be surprised somehow hard that is. The natural response to first seeing your 1+ pound baby with all those tubes and wires should and often is, shock, but sometimes it's "when will you do the circumscision") Anyway, the second part of my talk is more upbeat. The baby was born under the best of all circumstances (ie in the proper type of hospital with a NICU), the baby is pink and responding to Surfactant, and has not yet had any setbacks. Some of these babies do quite well and there is nothing at this time to suggest that your child will not be one of those. This is just the beginning of a long journey (at best) and there will be many ups and downs. Thew journey does not end at discharge from the NICU or even when the child enters school. The longer we go without obvious bad news the better, but you won't stop worrying until the child is well into school. Every parent wants to be able to hope for the best.

6:37 PM  
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