NICU filling with miscarriages

[JOLLIEHOLLY]

I am an RN on a general pediatric floor and have seen many children on the floor that are very acutely ill. Just in two months working there I have seen three cases of infants born with agenesis of the corpus collasum! One of my co workers responded by saying that as the years go by, more and more medically dependant children are going to fill the floor. I myself am a very conservative, however, what kind of quality of life does a infant born at 21 weeks have? These innocent babies are being born blind, deaf, missing parts of their brain, will have chronic seizures for their entire life, and most likely end up vent dependant. They will never grow to be productive members of society. If I myself gave birth to a child with disabilities I would love him/her just as I would love my son and daughter now. I realize children are born with these health issues at full term as well. It makes me wonder how many come into the ER having miscarriages and the baby is placed in the NICU. This is a very difficult subject matter, where do you draw the line? I sure can't call it. On top of all this, a recent article I read also states that the maternal mortality rate is increasing in the U.S. The article attributed it to the increasing c-section rate and advanced maternal age(women delivering after 35 y/o). I guess the c-section rate and advanced maternal age mothers go hand in hand though. In the end, who ends up the victim. The poor babies, I welcome any comments. Thank you.

[Lorie P.]

calling a living, breathing baby a "miscarriage" doesn't seem right to me. regardless of whether or not you agree with the measures taken, it's a person and i think that's disrespectful to the families of these children and to the children themselves.

it's such a personal decision, and really i can't imagine that any of us can cluck our tongues until we've actually had to make it.

thank you for saying this. as a mother of a former 23 weeker i fully understand this. my daughter is now a very healthy 9 year old with no problems whats so ever.

after she was born via emergency c-section due to full-blown eclampsia that was followed with a hysterectomy, i am very thankful that everyone fought to keep this tiny little 1.4 lb 11inch baby alive.

she is my only child and i thank god every day for her.

i also met many parents that lost babies that were full term during our nicu stay of 102 days and yes it is a very personal choice and decision.

so unless you have been in my shoes or other shoes of parents ,please do not judge how you would react until you have been there.

on that note, thanks to everyone that works nicu from the bottom of our hearts!!

[ktwlpn, LPN]

I am an RN on a general pediatric floor and have seen many children on the floor that are very acutely ill........One of my co workers responded by saying that as the years go by, more and more medically dependant children are going to fill the floor. I myself am a very conservative, however, what kind of quality of life does a infant born at 21 weeks have? These innocent babies are being born blind, deaf, missing parts of their brain, will have chronic seizures for their entire life, and most likely end up vent dependant. They will never grow to be productive members of society. If I myself gave birth to a child with disabilities I would love him/her just as I would love my son and daughter now .... This is a very difficult subject matter, where do you draw the line? I sure can't call it..... In the end, who ends up the victim. The poor babies, I welcome any comments. Thank you.

I'm at the other end of the spectrum-I work in long term care and I see exactly what happens..Years ago it was very common to see adults with numerous birth defects living in LTC-then we seemed to go through a phase where we were not getting any new admissions of that type and the older generation was dying out.Now we are starting to see it again -I've been thinking that with the advances in prenatal care and testing that these babies just were not being born for a period of time.It looks to me that now the pendulum has swung back.I see alot of older parents unable to make quality of life vs. quantity of life decisions.They want a baby no matter what the cost (emotional and monetary) and are willing to take the chance..I see the heartbreak the parents go through when they are unable to care for their severely disabled child/adult....There are no easy answers.I do believe that some limits should be placed on what I believe is "futile" care involving any patient of any age but it will never happen in this country due to the strong political voices of the disabled.They can't see the difference between choosing to curtail futile care vs. and society deciding that their lives are not worth living so they should be put to death.Bottom line-No mater what we believe we have to protect our right to choose....

[Miriam57RN]

There really are two equally valid perspectives on this. I see parents bringing home premies who've been hospitalized the first weeks, months, even year of their life bringing home their child and all is love, miracles and joy... and I see other cases down the line where all a family cares about is getting nursing coverage that day, that week... screaming at office staff if they don't... having become disengaged with care and wanting all their free time to work or whatever it is they want to do. On one case, a grandmother went to LPN school so she could earn money by caring for her grandson (now 14 years old) while remaining at home, though doctors have begged her not prolong his life (he's complete care - trach/vent/cath Q6h/ tube feeding, etc.) She wants him to stay alive long enough to get her daughter through LPN school, then they're both going to go for their RN's, while nurses come into their home and care for their son/grandson. Doing both well-baby visits (often of premies just coming home) and shift care (of long term cases) I can see it from both ends. Each case varies. I do agree with the poster who said that it's good families have choices though. Some of these children do extremelly well, others do not.

[SteveNNP, MSN, NP]

I agree that if a "21 weeker" survives, it's because it's a mis-dated IUGR 23-24 weeker. Canalicular lung tissue development starts at 16 weeks, but isn't extensive enough to support oxygenation/ventilation until 23 weeks. You can attempt to ventilate that baby as much as you want, and all you'll get is a whopping pneumothorax, dead baby, and traumatized family.

[dawngloves, BSN, RN]

Are parents given false hope by all the television programs promoting some good outcomes for preterm births?

I think so. How many times a month are there stories on the news about the baby born "the size of a soda can". Who the doctors said wouldn't live and now is home and "isn't it a miracle"?

No one clues the viewer into the fact that the 400gm baby was an IUGR 26 weeker or that the former 22 weeker went home went home with a g tube, trached and vented and will never see, talk or walk.

[lauftrbstmedicine]

As a nurse and a mother of two premies...I wanted to say my son was born in 1990 at 25-27 (it couldn't be determined) weeks weighing only a pound 11 ounces and my daughter 3 years later weighing 2 pounds and 8ounces at 27 weeks have been a tremendous blessing in my life. My son was born dead without heart activity and resuciatated by a german doctor-Dr. Krauss at Scott N White, Temple-TX who stated my son was a miracle and a fighter. My son went on life support for three days thenwas being taken off before I had a chance to see him much less touch him-I had a polariod taken and given to me. I finally saw him when he was about a week old. I was told they were taking him off life support and what happened would happen and he had that 50/50 chance. He lived and is 16 years old...yes...healthy and strong!!! Dr Krauss impressed me by remebering me and my husband when we ran into him many years later at a gas station as we were pumping gas. He recalled clearly our sons case. My son endured 8 surgeries before the age of five from hypospadias to hernias to correction of his vision from being in the highly oxygenated enviroment. At age two we were told he was legally blind and after multiple surgeries and cornea transplant he currently has double vision and does not wear glasses and unfortunately due to a botched surgery is sterile ( he is the only male remaining in my husbands side of the family-he doesn't know he is sterile-we were told back then that possible new procedures in the future could help him). My son may not ever be permitted to drive a motorvehicle. When in elementary, he had some learning obstructions-obstacles that with patience and endurance he got through. He is musically gifted and was invited to play at Carnegie Hall last April and performed beautifully! He has short term memory loss and must be reminded and told one task at a time-he cannot multi-task. He is self taught musician-hearing it once and playing the piano, trombone, clarinet, tympiani and drums- he can play musical instruments of all kinds. He sees a second shadow with every person and object and has learned to adapt and discern and can pitch in baseball a mean fast-ball at 88mph. He is a overly caring, joyous, intelligent person who immmediately people are drawn to. He is a leader at school and a whiz on computers. He is loved by his teachers and his peers. My house stays full of kids of all ages that flock to him!!!! He is known to the elementary and highschool students alike. He has a orthopedic disorder, one leg bows in greatly that causes problems with his ambulation and even though he knows and I know more surgeries await him he is a positive person. Also, with all his diabilities his classmates and all those who know him have never teased him. They all rally to him and support him. He is modest and unassuming and gives back so much more than he recieves. He is quiet in nature and shy...and always willing to lend a helping hand to the underdog getting even the bully to lend a hand. He is soft spoken and a listener, he is respected.

My daughter is a Type 1 diabetic, wears glasses- diagnosed with ADHD and is not recieving any treatment for ADHD due to I feel it can be managed with behavorial training, which is working. She has some learning difficulties with math and reading. She has chronic asthma with severe allergies. She never had to have corrective surgeries. She recieved surfactant and my son didn't. She has had problems with her weight since age 2 being overweight. She is a deeply caring, deeply joyous-person who is confident, intelligent and outgoing. She is also musicaly talented. She loves animals and the outdoors. She makes friends easily. She is very studious, hardworking, and loved by her teachers and classmates.

I had HELP syndrome with my son and FULL BLOWN Eclampsia with my daughter with each pregnancy resulted in a emergency unexpected C-section. Then, in 2003 it was determined I had uterine cancer (hereditary) and ovarian cyst and had a total hysterectemy. The doctor felt that the unusual scarring inside my uterus and the stage of my cancer probably played a unknown role in their early deliveries. I thank GOD daily for my miracle babies. I thank all the scientist and medical researchers that created the medical knowledge that saved their lives. I am fortunate that they are as healthy as they are-we were given such a bleak outlook. I never accepted SSI or state welfare...I never accepted any labeling of my children either. I think not accepting the labeling and pursuing exhaustively everything thrown against them has helpedd them to be the wonderful teenagers they are. Just because they started out so small and defenseless, so tiny doesn't mean they can't have a huge impact in this world. I remember vividly the NICU and the special care unit at ScottNwhite-Temple,Tx where they spent the first months of their lives. I wan to thank those special nurses who cared for them and loved-nurtured them when I couldn't be there. To this day, I know God has plans for my children because they have already overcome so much.

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