Unexpected Birth Defects

debralynn · Aug 23, 2002

As a parent of a handicapped child myself, I think it would be very nice, that if these abnormalities were fixable, that you would tell us parents that they can be corrected with surgery. I am not saying that you should paint us a rosey picture, but also dont paint us the most gloomy picture either. Give us encouragment(and I dont mean to say you dont), let the parents know, that when they are ready to pursue these corrections, that you or someone else would be glad to steer them into the right direction. Hope is the best medicine I believe. Even though my son didn't have any physical handicapping features, 19 years ago I remember when he was just 3, we had this "doctor" and I use the term lightly, paint us the most God awful picture imaginable! Even though 19 years later, some of the things this "doctor" said has come true, I believe he should have told us to do everything possible for the success and wellbeing of our child! (and yes I did do everything I could for my son to be able to reach his fullest potential). Sorry, didn't mean to ramble, its just when as a parent you find out that this child you have waited for is not the child you got, its like the child you expected died. So I think words of encouragment are the best medicine. My son has done alot of things these doctors never anticipated! Sorry, I will get off my soapbox now!!!!

SmilingBluEyes · Aug 23, 2002

wow this got long; it's an issue that really rings w/me so here goes...

Having been the parent of a baby who came prematurely with a surprise/undiagnosed defect, I can somewhat relate as a mom and nurse. (my son had sagittal synostosis, which while it can be fixed w/craniotomy, is still hard to bear).

You go thru the shock of seeing "something wrong"--- Then the guilt (what did I do during pregnancy that CAUSED this????)....then anger. Oh yes, anger. And when the staff treats you indifferently or fails to keep you informed you get REAL angry. I would have definately changed a few things about how it was handled for me. We kept asking the staff what was wrong w/his head, why it was so mishapen (it looked the shape of a LEMON). Also we asked why he could NOT lay with his straight, which we thought was strange, and got NO answers (no, I was not a nurse at the time and had never heard of synostosis). He was in SCN for about one week......

Finally, a ped informed us what was going on DAYS later! The WORST was actually when after surgery my poor baby looked so BAD...face so swollen he could not open his eyes, head bloody/bandaged and w a JP in the site.....I was not prepared in ANY way for how he would look........not to mention the unit of blood hanging over his crib in PICU which no one prepared me for, either. We just walked into PICU and faced the horror of post-neurosurgical appearance, unprepared. I was in hysterics. Anyhow, I digress...

I have been in the position of seeing something wrong that no one else caught (even a dr at first glance). (esp polydachtylies or imperforate orificees)---- I called attention to it to the dr very quietly and also gently informed the parents we would be examining the baby more closely and informing them of all the findings. Often, this is taking place in mom's room, so dad is often observing what is going on, and I am explaining as I go. I also tell the parents (if the dr has not done this, which he/she usually has), we would also see to it that specialists would provide possible solutions/treatment and ABOVE ALL we would KEEP THEM IN THE LOOP AND WELL-INFORMED! I also would frequently ask them if they had questions or concerns and made myself available as possible to be there for the parents. Lots of hugs and listening going on at this point, I tell ya.

Having been thru this, I emphasize keeping them informed more than anything else. Parents feel so "out of control" and "out of the loop" at time when they need positive affirmation and encouragement. That is what I do when this happens in my practice, which thankfully, is rare. I just do what anyone should...put myself in THEIR shoes and think how I would want to be treated in a similar situation. Nothing on EARTH is worse to me, than having a baby and seeing or hearing there is something "wrong" with your child. Nothing.

shay · Aug 23, 2002

Thanks for the replies. Obviously, this happened to me recently........again. It's happened in several of my deliveries, and the way I usually handle it is to explain as gently as possible without a doom and gloom demeanor what, exactly, is wrong, and what will happen next. I.e., your son/daughter has club feet. This is not life-threatening, and he/she is perfectly normal in every other respect. An orthopedic surgeon will see your baby, and will come discuss the treatment with you." Or something to that effect. I like to then point out the 'beautiful' features of the baby, and especially comment on which parent the baby resembles.

I see the shock on these parents' faces and then they start to cry and I just feel like they should be made to feel that yes, there's a problem, but it's not the end of the world right now, and your baby is healthy otherwise, and beautiful. I explain to them what the defect is, and emphasize that they didn't cause it to happen. I try to make them feel like their child is not a freak or defective, and be as reassuring as possible.

Anyhoo, that's my practice. Good to hear from the parents' point of view.

L&D.RN · Aug 23, 2002

I had a recent birth where the baby girl had obvious genital deformities. It looked like a tiny little member above her privy parts. I quietly pointed it out to the Family Practice Dr who was going to be the baby's doc. His explanation to the parent..."The nurses are concerned about your baby's genitals, but I think we'll just watch it and maybe have a specialist look at it in the future." That was it. "The nurses. " The nurses were the ones that answered all the lady's questions once she got over her shock.

And how about the unexpected ones that you can't see...we just had a baby born with a diaphramatic hernia that ended up being shipped out with a very poor prognosis. Her mother was very natural, no meds during pregnancy, excercised, natural birth, 3rd child, baby strip looked beautiful all night, then it was born and you know the rest...Full code, O2 sats @ 50% on 100% O2, shipped out to a NICU by air ambulance...terrible.

sleepy247 · Aug 23, 2002

My son was born with a cleft lip 18 years ago. So I can tell you how NOT to handle a situation first hand! The nurses and doctor tried to keep me from seeing his face well in the delivery room and then they whisked him off to the nursery before I could even hold him. I understand that once they saw one defect, they were probably concerned about what else might be wrong with him....there was absolutely nothing wrong with him. Then I was asked about a list a drugs I might have taken during pregnancy that may have caused this. ( I hadn't taken any of them, and in fact, the possibility that I might have done something to cause this hadn't even crossed my mind until the doctor brought it up)

I usually try to be a straightforward with my patients as possible about what I see, and like someone has already mentioned, point out all the things that are perfectly fine. For instance, my son had the most incredible eyes and long eyelashes and beautiful thick black hair.

KRVRN, BSN, RN · Aug 23, 2002

It's also hard when the baby has an obvious deformity that SHOULD have been picked up on ultrasound. We had a baby born via CS for FTP. He ended up having a severe hydrocephalus. In the NICU we just had no answers for the parents as to why this wasn't diagnosed prenatally. Not that they would have done anything different (besides skipping the vag del attempt), just a big shock for them.

As a side note, we also had a "known" severe gastroschsis that was "diagnosed" via ultrasound. Parents were prepped for the outcome, interventions, etc. Scheduled CS... baby comes out completely normal. Couldn't figure that one out. We just hoped her ultrasouond was't mixed up with soumeone else's somehow. We wouldn't want someone else to have an unexpected gastroschsis delivered lady partslly.