Any 22 weekers out there?

tralalaRN · Feb 24, 2011

My former preemie daughter (25 weeker) and 25 years old - mild CP, LD, etc. is currently pregnant - 22 weeks. I want to take her and run to the hills for the next 8 weeks. As a nurse, I could never work NICU d/t the ethical issues I've seen with micropreemie survivors. Don't think I'd sleep at night.

umcRN, BSN, RN · Feb 24, 2011

We have one now, almost 3 mos old now, had her PDA repaired, pretty much tolerating feeds but her eyes are pretty bad, no IVH but you never really know what their heads are like until their older anyways, even with an MRI

tralalaRN · Mar 3, 2011

My daughter, mentioned above - 25 years old, 25 weeker had no IVH. She came home from the NICU with no meds, no O2, no apnea monitor even, prior to her expected due date. At 3 she was dx with cerebral palsy, at 16, with NLD and high-functioning autism. Having been involved in a parent capacity in various preemie groups over the years, it sure seems to be very very common that even the kids without IVHs are coming out of the NICU with residuals. Autisms are increasingly apparent. Non-verbal learning disorder (a cousin of autism) seems to be prevelant among this group too. Absolutely, it can take years for the true picture to emerge.

So much for catch up by age 2.

walkingrock, ADN · Mar 6, 2011

Thanks all for the books, etc. We don't technically resuscitate until 23 wks; however, it is a problem when it is 21-24 or something...unknown, then we do respond and do what is appropriate, the parents are involved with info and discussions with NICU before-hand (if time allows!) of course. When the dates are known, and early, we talk to the families, if they wish. It is heartrending, but leaves one feeling like you did a good thing, when you talk honestly to a 22-something wk gest. family in L & D, and tell them we can't do anything, that to attempt would be causing their child pain, and would be futile in the long run. It could change, but that is what we do now.

sjc80 · Mar 6, 2011

Quick question, when saying 22 weeks are we talking post-menstrual age or post-conceptual age?

BabyRN2Be · Mar 14, 2011

By LMP and/or ultrasound dating what the LMP would be, I believe.

CNAkt · Mar 25, 2011

I know this is a thread about 22 weekers, but I just wanted to throw my story in here.

My son was born at only 24 weeks 3 days gestation, due to negligent behavior from two separate hospitals and my OBGYN. My little Matthew weighed 685 grams, and was 13 inches long. A NICU transport team was immediately called when my OB realized I was in labor (I was fully dilated when she happened to pay attention to me). It took about an hour for the team to arrive, and after they were set and ready, my son was born lady partslly within minutes. He was immediately taken to the team, where they stabilized him and rushed him to their hospital. He stayed in the NICU for one day shy of 4 months.

During his 4 month long stay, my son faced terrifying complications. He was, of course, extremely premature, so you could see right through his skin. He had jaundice, he could not breathe on his own and was on a ventilator for about 2 months. He had a horrible scare with NEC, where we feared he would have to be flown to another hospital for emergency surgery. Thankfully, he recovered without the need for surgery, due to the excellent care of the staff. At two months old, he required laser eye surgery for ROP. His biggest problem was breathing. He made it home just before his first Christmas, but he brought home oxygen, an apnea monitor, and ten different daily medications. He was a very sick little boy for a very long time. At 6 months old, he required surgery for bilateral inguineal hernias.

Slowly, my little Matthew grew stronger and healthier, and he was able to be weaned off all his medications, oxygen, and apnea monitor. My little guy is now 4 and a half years old, and there is no question that he is a wonderful, amazing child. But he had to fight so hard to get where he is today, and he suffered so much. He is nearing the end of his second year of preschool, where he is in a small special needs classroom. He has been diagnosed with autism, sensory processing disorder, communication disorder, and global developmental delays. And he will continue to struggle all his life. No one knows if he will catch up to other children his age. Right now, he is about 2 years behind in development.

I guess the reason I'm writing all of this is that I was never given a choice between "do everything possible to save my baby" or "provide comfort care and give me a little time to show my baby I love him". It all happened so fast, and no one actually stopped to ask me what I wanted, and no one explained the long road that was ahead of us, and how much Matthew would suffer because of it. Looking back, and knowing what I know now, I don't know that I would change anything, and maybe that makes me a horrible person. I just might be a horrible person, but no mother ever wants to be the one to say "let my baby die". I know I wouldn't have been strong enough then to say let him go, even if they had told me all the terrible things my son would have to go through. I was weak, and scared, and I loved my baby more than anything in the world.

My little boy has been through a lot of pain in his life, and he's suffered so much. But I look at him today, and I honestly think he deserved the chance to be the mischevious, energetic, sweet, cuddly, excitable little boy that he is now. He may not developmentally be the same as his peers, but medically he is doing amazingly well. He's a happy boy, and he enjoys life every day.

I just wanted to give you a mother's perspective on this issue. I completely understand when medical professionals deem a child too early to save, or when the child has too many complications to ever have any hope of leading a normal life. I don't dispute that issue at all. But as a mother, I wanted you to understand my journey.

Deidre Shiobhan · Apr 25, 2011

we don't resus any babies below gestation age of 23 weeks because these babies are usually non viable at birth. parents will be spoken too and pregnancy will be prolonged for as long as possible.

personally i feel that having worked as an nicu nurse for more than a decade and seen many elbw babies going home eventually with complications and mobidities. :crying2: i will not want these extreme tiny bbs to survive but will never be able to have a good quality life..... :rolleyes:

tralalaRN · Apr 25, 2011

Well said, Deidre.

So much heartache and suffering of these babies that no one sees. Always the miracle babies and not the other side. And boy is there another side.

Deidre Shiobhan · Apr 26, 2011

Yes tralalaRN there's always another side, it's not perfect all the time. I feel that we must paint a realistic picture and not just give parents false hope. We cannot play GOD all the time!!:bowingpur

tralalaRN · Apr 26, 2011

Today, ironically, is one of my daughter's 25th birthday. She was born at 24ish weeks gestation in 1986. At two days of age, she sustained a massive bilateral grade IV IVH. She began a significant down-hill slide with full vent support and frequent cardiac episodes. Shortly after that, we met with our hospital chaplain and told her that we wanted to d/c life support and let her go to God. Being Catholic, we believed that this was nothing more than torture. Our chaplain agreed. My husband met with the neonatologist and told him that we wished to d/c the vent and let her go. I was still pregnant with her twin at that point.

The neonatologist said that he was unable to do so because of the Baby Doe Laws in place that prevented them from removing the vent. We were horrified. But powerless. Very young, didn't know anything about this foreign world of neonatology or rights in medical care at all. We unfortunately, did not fight to remove the vent. We felt absolutely helpless.

She spent 5 horrific months in the NICU. 500 heel sticks over that time until her feet began to break down from the multiple stabs. She developed hydrocephalus for which an external shunt was placed - we found out later, without any anesthesia. Multiple infections, massive brain damage.

Today she is 25 years old. Today is the anniversary of the Chernobyl nuclear reactor meltown. 25 years ago, our world also melted down. She survived - sort of. Well-loved, but in horrible horrible shape. She has massive cerebral palsy, profound mental retardation, uncontrollable seizures. She requires one on one care 24/7. She is unable to sit for long periods of time. She has never walked. She used to be able to sit on her own until she needed rods placed in her back to prevent further curvature of her spine. She never sat unassisted again. She is now on a air filled mattress that rotates her from side to side 24 hours per day. Our marriage collapsed from the weight of continuous care-giving with very little help.

This is the other side that no one ever hears about. The endless cruelness that this type of medicine can wreak on a family.

The other side of the miracle baby mentality.

TiffanyMarie84 · Jun 10, 2011

I browse these forums all the time,....as a nursing student about to begin my first semester. Sometimes I get sidetracked hopping around reading about different specialties...today I ended up here, and I am completely taken aback. Its not that I don't understand that issues like these exist, it's that I am a twenty six year old premie myself. Born to a drug addict mother, I was only 24 weeks. It's scary to think I could have easily been permitted to die....I'm watching my two sons play as I type this, shaking my head in amazement. I have graciously survived with only ear problems that I know of. I've had many surgeries, and thankfully don't need hearing aids yet, though I may need them someday. I'm really smart, I'm a straight a student, and I'm getting along well in life. I hate to think I may be an exception or one of very few, but at any rate, I'm glad I was saved,