Wednesday, February 07, 2007

Bungee

The mother came in with preterm labor at 21 weeks gestation according to her last menstrual period. Since she had no prenatal care, we weren't certain that the gestational age was correct, and as sometimes happens in these cases, when the baby was born he looked and weighed more like a 24 to 25 weeker. My partner resuscitated the baby, in accordance with the mother's wishes, and we admitted him to the NICU.

He really did pretty well at first. He was on a ventilator but on modest settings and not much oxygen. The afternoon of the admission I sat down with the parents and had a long chat with them about premature babies of this gestation. I told them, among other things, of the typical problems these kids have, the extended NICU stay, the risk of serious complications like intracranial hemorrhage (bleeding into the brain), the survival rates for kids like this - about 55% to 75% - and the percentage of survivors who have impairments - about one-quarter have major impairments, one-quarter moderate impairments, and about one-half are normal, although there is a high incidence of problems like learning disabilities, attention deficit disorder, and borderline intelligence in the normal group.

There was understandably concern in the parents' eyes after our talk, but hope too. I told them their baby was doing well right now, but he still had a long way to go.

About 24 hours later the baby was dead. The morning after I talked to the parents, he suddenly desaturated (the oxygen level in his blood dropped), and none of our interventions - ventilator changes, oscillatory ventilation, and so on - could get his oxygen level back up. An ultrasound of the head showed a massive intracranial hemorrhage (IVH). My partner and I discussed it, and after discussion with the parents he removed the baby from life support, and the baby died.

A variety of anatomic and physiologic features of very premature babies put them at risk for IVH. Fortunately, its incidence has decreased in the last 25 years, and most babies who have an IVH usually have a small one, but we still see awful ones like this from time to time. It's very frustrating, because they can be unpredictable. A kid you think might get one doesn't, and vice versa. This baby was cruising along nicely; he didn't need meds to keep his blood pressure up, had no fluid boluses, and was about as stable as a 24 to 25 weeker could be. Why did he have the bleed when other, sicker premies don't?

I couldn't help but think of the bevy of emotions this mother must have experienced in the last few days: The worry of preterm birth and losing the baby; the joy of the baby being older than thought and potentially viable; the sobering news of the possible outcomes; the hope caused by his initially good condition; and finally, the devastation of the severe hemorrhage and the sorrow of holding her baby as he died. I often think that the emotional journey of a NICU parent is like a roller coaster ride, with many ups and downs, but this mother's was more like a bungee jump. You don't recovery quickly from something like this.

27 Comments:

Blogger STOLEN ANGELS BLOG ~ said...

As an author, bereavement counselor, grief support group facilitator and mother of three "angels" I can say that most mothers don't recover fully from the death of their baby. Most don't think they can. It's an awful pain that claws at your insides long after others have gone on with their lives and the doctor has forgotten your face.

My 1 pound, under-developed 24 weeker lived 10 days despite a grade IV brain bleed. His brother, born at 25 weeks, weighing more than 2 pounds only lived 2 days, despite breathing on his own and having no identifiable problems.

Who's to determine who lives and who dies? Only God. Stay encouraged and know that your efforts to save these little ones isn't forgotten.

Sharee Moore
www.stolenangels.com

8:11 PM  
Blogger Nurse M said...

I sometimes find myself wondering things like this as well. I can't imagine what some of these parents go through. One of my first days on the unit a newborn, awaiting a heart transplant, had a terrible code. When the parents finally got to the hospital they were updated before seeing there baby. Upon entering the room the mother broke down in shrieking cries and my heart just went out to her. It hurt to even listen to.. I can't imagine how much pain and hurt she was feeling knowing that her baby was not going to make it.
I do my best as a nurse to be supportive and give hope, while not providing false reassurance- and there is that fine, fine line.

8:57 PM  
Blogger Laura said...

neodoc wrote: "A kid you think might get one doesn't, and vice versa. This baby was cruising along nicely; he didn't need meds to keep his blood pressure up, had no fluid boluses, and was about as stable as a 24 to 25 weeker could be. Why did he have the bleed when other, sicker premies don't?"

I wonder this all the time while caring for my tiny patients.
i also wonder about this truth when i play with my own "normal" ex 24 weeker. the week he was born, he joined 2 other 24 week males born that week. of the three, he was the sickest and yet he is the only one to survive.
i can only imagine this momma's pain and grief. my heart goes out to her.

1:25 AM  
Blogger Jacqui said...

It must be so painful for the parents and my heart goes out to them.

I've often wondered why my son ended up with CP. He never had a bleed show on a scan but did have PVL show on his 28 day scan. Except for a couple of incidences, he had a pretty good run through NICU and Special Care. I know of a lot other babies that were a lot sicker than him and yet, they are supposedly fine and he has CP.

But at the end of the day, it's just one of those things and I'm just so grateful that he is here.

It must be very hard for the medical professionals to witness such heart break. I'm not sure that I would be able to do it.

2:32 AM  
Blogger terri w/2 said...

As a mother who has lost a pregnancy to miscarriage I know the devasation of losing a baby. However, it pales in comparison to watching a micropreemie with a grade IV IVH suffer and then later raising this child who has mental retardation, severe cerebral palsy, etc. The grief in watching your child suffer through their life is chronic.

Sleep well knowing that the decision to remove life support in this situation was the kindest most humane thing you could have done. I wish I had had such caring neos present at my daughter's birth - who would have allowed my child a dignified death, cared about her present and future suffering, rather than "death by inches" as one mother described it. You did the right thing even though it is tremendously difficult for all involved. Be at peace with this ND.

6:05 AM  
Anonymous Anonymous said...

My heart goes out to the parents. I lost my beautiful baby girl at 22 weeks gestation due to cystic hygroma, non-immune hydrops, and Turner syndrome.

The reasons were unknown and the karyotype did not provide any answers. We received the devastating news at my 18 week sono. and we continued the pregnancy knowing this baby would not make it. I do not believe it is possible to recover from the death of a baby. I do know that my baby was an excellent teacher that taught me some very hard lessons. It was through her death that I learned some very important lessons about life and I am probably a better person and mother for it.

For a long time I had simply assumed that God did not view me as a suitable mother, despite the fact that my husband and I could provide a stable and loving home.

I now have a very healthy, happy, 6 month old baby girl and currently in my third month of pregnancy. We hope for the best but experience has now taught me to be prepared for the worst.

In closing, I just have to say as a first time commenter that I really enjoy your blog and believe you to be a very kind and compassionate doctor.

Julie

8:04 AM  
Blogger Candy said...

I don't know that you ever recover from this. I know grief changes over time. I've experienced the change already in the 1.5 years since my daughter's death. But, a bereaved parent will never ever be whole again. They are forever changed.

I experienced much of what you described in that my 25 weeker was doing fabulous. I can't count the times that we had the neontatologists and nurses tell us that Emma "didn't read the book", that she wasn't doing what preemies her size do. She was on CPAP the first day and then moved to a cannula. But, in less than 10 hours from the time that the NEC was discovered she was gone. Gone that fast!

"In a heartbeat ~ a life is stilled, a dream dies, and Heaven becomes amazingly real." ~ Dawn Siegrist Waltman

www.emmazinggracefoundation.org

12:17 PM  
Blogger clara said...

I agree, you don`t recover. 5 years after my son died I can say that it is possible to be happy again and enjoy life, but there will always be someone missing. I spent 7 weeks with my son in the NICU, he had severe HIE so I was actually envious of the preemie moms. I'm glad that these days doctors and nurses know to let the parents spend as much time with their babies as they need, it really helps.

12:51 PM  
Blogger clara said...

I should rephrase that, I was envious of preemie moms because their children moved and cried when mine never did. Losing a baby is an enormous tragedy no matter how old they are or what they died from.

12:54 PM  
Anonymous Anonymous said...

When I bungee jumped in New Zealand off the highest bridge in Queenstown I thought I could never be as scared or in awe of the unknown as I was when I stepped to the edge of that bridge. The seconds before the jump were much worse than the actual jump itself and you feel elated when it comes to an end...victorious…proud for being able to face fear head on (literally). Unfortunately, that is not how the NICU experience is. It is as nerve wracking and scary as suggested and sometimes even worse than expected. And even when it ends there is no elation, no victory, just more worry about the future.
I am the mother of a 23 weeker who died shortly after birth and the mother of a 24 weeker who is thriving at 10 months old (who yesterday showed us her first 2 teeth). I don't believe there is anything anyone could have said to me to prepare me for the NICU experience, the death of a child or even the life of a preemie. It is one of those things in life that can't be described or explained.
I am so sad for the parents described in your blog. When our 23 weeker was born we were told he had no hope so we just held him until he passed. To this day, I am so thankful for the honesty we received the morning he was born...no hope actually saved us. As for my daughter, again, we weren't given much hope- just told to keep one foot in front of the other, but we did have hope--we had hope because they didn’t tell us not to. Meaning that sometimes the more powerful words are the ones that aren't spoken and sometimes it is best to deliver the bad news as it can be freeing even as it is devastating.

2:00 PM  
Anonymous Chris and Vic said...

The parents who are writing in response are those who have lost an infant in the NICU and know the feeling.

I imagine the other readers of your blog listening, listening with respect and awe, and trying to walk a mile in the shoes of the grieving parents.

Though I haven't lost an infant, I have lost someone, an adult, who I dearly loved. The physical experience was staggering--very like a bungee jump, as I imagine it, with a long downward descent. There was a great cavernous tunnel extending from the back of my throat and the back of my eyes down and down. It didn't end in my mid-section--it went down and down some more. For weeks there was nothing there but a seeming vacuum. There was no hunger, certainly, in that tube of a black hole. (I didn't eat much for a very long time.) My skin's surface felt funny, too, cool and lacking in the usual sensation. And I didn't feel tired or able to sleep.

After a while, my brain tried to figure it out---why this person should have died. Why now. Kubler-Ross stages of grief faded in and out, and in and out again. My brain couldn't keep hold of the possible reasons I had figured out.

I felt out-of-touch with anyone who could smile or laugh. I would ask, "How can ANYONE be happy? It feels as if the whole universe was or should be grieving for such a tragic loss."

I blamed a doctor who didn't show up in a timely fashion. Anger and blame didn't change anything. There was no such thing as "angry release". There was no release . . .

I had to carry on, and go to work and keep the house clean. I had to speak. There was no focus in anything I did--I was an automaton.

I allowed myself to think of and grieve for that person for as long as it took. I am usually a disciplined person, who puts time limits on things, who draws the line. But not with this death. It had a life of its own, and I didn't try to control it.

It has never ended in 6 1/2 years. The photo is on the piano, and I feel that missing person watching me and sending me messages. I talk back to the photo when no one is around.

I wish I could be more Zen about it and say "yes" to letting go. I probably have let go some, but not altogether.

Others reach out for me/to me and distract me for periods of time.

I imagine that my missing person has the freedom and vision of traveling the whole world in the blink of an eye---watching those he loved at times, going to concerts at times, hiking in Acadia, or climbing in Scotland. I am glad that he was set free in some ways, because he was often anguished in this world. His impossible situations are resolved by his moving "to another plane".

Now I know NOT to be afraid of my own death---because, whether there is a heaven or afterlife or not, I know I will see him again. I just know it.
Chris and Vic

4:06 PM  
Anonymous Helen Harrison said...

To Terri w/2,

Re: "Dying by inches"

Over on preemie-list we have seen three children die from liver cancer, probably the result of prolonged TPN treatment, and we have followed their anguished families through very, very long bungee jumps indeed.

Your quote also brings to mind the experience of my friend, Shay Eikner, of Denver,Colorado, whose twins suffered major IVH at birth.

Shay asked that her son Joshua, the more severely afflicted twin, be removed from life-support. The neonatologists refused.

The Eikner twins eventually came home with multiple disabilities.

Joshua's childhood, especially, was marred by constant medical problems. At the age of ten he underwent a hemispherectomy in which half of his brain was removed to correct an intractable seizure disorder.

Joshua developed hydrocephalus as a result of the surgery, and shunt infections became a repeated and excruciating problem for him.

After 20 shunt revisions in a period of 22 months, Joshua lapsed into a coma and died.

Shay recalled her son's life, in a parent support group publication:

"During the ten years between Josh's birth and death, it seemed as if the doctors were slowly chipping away at his body and his spirit."

"Surgery piled upon surgery, many simply an attempt to fix problems caused by the previous treatment."

"What stands out," writes Shay, "are the constant battles to find Josh help and treatment. As his care became more difficult and unsuccessful, much of the medical community backed away in frustration."

"Believe me, I felt the frustration too, but I spent the endless nights holding him while he cried in pain and asked me to make the hurt go away."

"My greatest fears from ten years ago were realized: that in spite of all the love and nurturing we gave Josh, we could not take away the pain or make him well."

4:15 PM  
Blogger terri w/2 said...

About a year ago, there was a segment on public television about the "Bubble Boy" - his life, all the hope that the physicians gave the parents immediately that he should be saved as there was a cure right around the corner. The parents eventually had to take him home, and then the segment focused on the physicians that were so eager to keep him going while they found a cure, one by one by one backed out of their lives and went on to other careers, foresaking the child and family.

The segment interviewed psychologists who worked with this child as he grew (still in the bubble) - how they were so bothered by his emotional suffering, his caregivers in general were so bothered that they did not stay with the family for long. Eventually, the boy was contaminated, and for the first time in his life, he felt human touch without the barrier of gloves, as he was taken to the hospital unprotected and died shortly after.

I remember thinking as I was watching this, that there were incredible parallels to neonatal care. How we really don't know which babies will survive and thrive and those who will survive and be devastated. The physicians who save are not around years later - they can move on, the parents cannot in the case of a bad outcome.

Anyway, just had that thought occur to me when reading the account of the Eikner twins.

9:34 PM  
Anonymous Anonymous said...

poor little baby,poor parents and poor doctors and nurses

4:41 AM  
Blogger PaedsRN said...

21 weeks? Man. I know it's not necessarily a popular opinion, but I'm in the "don't try" camp when it comes to that particular gestation. Tough if you don't know for sure though.

3:22 PM  
Anonymous Anonymous said...

I believe that healing after a child's death is possible. It's been true in my life, at least. I have had two babies die in my arms and one died in my womb. The breakthrough moment for me was when I began to believe healing was actually possible. Our ability to heal has nothing to do with how much we love our child, but with how bad we want to break free from grief's unforgiving grip. My life is certainly different, less carefree than before ... but it's more meaningful. I ooze compassion, I cherish life and I cling to hope and I've found an unshakable purpose. The same can be true for others, too.

4:56 PM  
Blogger neonataldoc said...

Thanks, all, for the comments and experiences.

PaedsRN, we don't try at 21 weeks. This baby was clearly more like 24 to 25 weeks, and the mother had asked us to do what we could if the baby turned out to be more mature than 21 weeks.

9:14 PM  
Blogger Lisa - Mum to Mitch & Harry said...

Dear Neonatal Doc,
I for one found enormous encouragement and support in the fact that the NICU staff who cared for my 24.6 weekers obviously took their jobs to heart. We spent almost 5 months in hospital and there are a number of times when the staff warned us that the boys probably weren't going to survive. They had to overcome so many hurdles and honestly the gut-wretching fear has never truly left me since that time.

But within the heartache and fear there were moments of unbelievable sweetness. I still remember with tears in my eyes the day we discovered one of the NICU registrars had taken Harry out of the department and shown him the hospital Xmas lights. He told my mum that he has spent so many nights sitting next to Harry's humidcrib willing him to survive, that when he knew he was soon to go home he wanted to share how wonderous the world could be. Such a kind gesture and one that helped my family so much.

We are fortunate that both our boys finally came home and are progressing fairly well at this stage. And we are forever grateful to the NICU staff for loving our boys even when there seemed no hope.

Lisa
mum to Mitch & Harry

5:51 AM  
Anonymous Anonymous said...

I'm new to this blog and have spent the better part of the afternoon growing to appreciate ND's insight, empathy and realism in the archives.

After having a 27 weeker who was plagued during his NICU experience and left with 39 diagnoses after 140 days, I cannot imagine a more inept and trivializing (or pervasive)cliche then the NICU roller coaster. Clearly, as ND recognized with the tragic experience of these parents, a "roller coaster" cannot possibly encompass the intensity of emotions.

It seemed everyone I spoke with during our NICU journey would blather on about the "roller coaster ride"--NICU staff, other parents, Joe Q. on the street. After my son made his umpteenth attempt to go visit Elvis, I had tremendous difficulty relating to other parents who lamented their roller coaster ride whose worst experience was an infant who needed a single blood transfusion or who had it's first A&B while trying to nipple.

It is such mindless sentiment that I had trouble not being hostile towards parents who used it. If I was on a roller coaster, they must be on the tea cup ride at Disneyland. I was terribly conflicted about not having more empathy for them, because anything short of the happy, healthy, fully-planned and -prepared-for-full-term birth is traumatic and deserves empathy.

Then I realized they were simply parroting what the staff had told them they would feel as it is exceptionally difficult to express what you truly experience. The trouble is, staff were using the same term to describe the death of an infant, my son's legion problems, and the 9 pound 37 weeker's 2 days of phototherapy and blood sugar monitoring.

It felt like they were simply using it to "acknowledge" my son's difficulty, without having to delve too deeply into something they were clearly uncomfortable discussing. Give the parents a pat phrase to use, and hopefully we won't have to hear too much sentiment. I suppose it can be incredibly draining to work in the NICU environment day to day without sheilding themselves to a certain extent from the constant emotional trauma around them.

There was nothing amusing about my ride, it felt more like g-force training at NASA. Another parent I know more aptly described it as navigating class V whitewater rapids.

The term roller coaster ride has no more relevance in today's neonatology than the proverbial shoe box on the wood stove. It is demeaning and a poor analogy and allows you to evade true empathy for NICU parents. I sincerely encourage ND and the other NICU professionals here to use the phrase only when you are planning a trip to Six Flags.

11:21 PM  
Blogger terri w/2 said...

Well said, anonymous above. I've always wondered why it is that when a family member is injured in a car wreck, ends up in intensive care, has massive complications and on the verge of dying that everyone seems to be cognizant of the horrors the family is experiencing.

The very preterm baby is born, placed in the NICU, has massive complications, and uncertain future, tries to die multiple times, and you hear the pat "roller coaster" - or worse yet, you are contacted (as we were) by the hospital public relations department to be interviewed by various newspapers, etc because it's such a "miracle." There is an incredible disconnect going on here.

As a nursing student, I can tell you there is absolutely no NO comparison to the professionals dealing with this situation and the parents/loved ones who are dealing with this.

When 9-11 happened the whole country was justifiably horrified -glued to their TV's - well, I told people that 9-11 was what we endured when our children were born, only on a less global scale. Later, a parent support group newsletter for families of kids with disabilities came out and said the same. Our children's birth was our personal 9-11. Compare an exciting Disney roller coaster to 9-11 and you get the idea of why this is offensive.

7:52 AM  
Blogger The Preemie Experiment said...

We were never given the analogy of "roller coaster ride" during our NICU stay but we sure heard "the honeymoon phase" alot. In the first 2 weeks after Paige was born the staff kept on telling us that she was doing good because she was in the "honeymoon phase". When those 2 weeks were over and Paige started being a normal 25 week preemie (desatting, crashing, infections, etc) we were told that the honeymoon phase was over. It drove me nuts!

12:18 PM  
Blogger Lisa - Mum to Mitch & Harry said...

While I understand the vehement objection many parents of prems have to the term "rollercoaster ride", I found that analogy preferable to the endless platitudes..."doctors can do amazing things these days" and "everything will work out". I wanted to scream and shout - "the doctors don't even know if my babies will live, let alone how disabled they will be".

Now that some time has passed I can recognise that friends and family were grasping for something to say in a situation which was truly beyond their ability to comprehend. Even now I am stunned by some people's comments about my beautiful boys - "aren't you lucky to have them as babies for that bit longer". Good grief, I would give anything to have had a healthy fullterm pregnancy. And my "favourite" - "they must have really wanted to stay". As opposed to the precious babies we saw in NICU who never went home and who died when they should have still been inutero?

Having an extremely premature baby is an experience that no-one can truly grasp unless they have been there themselves. And I would not wish the experience on anyone.

7:15 PM  
Anonymous J.net said...

The term "rollercoaster ride" was also used when our twins were in the NICU 18 years ago. With one, the experience was more like the elevator ride on MGM's Tower of Terror. Everything that could go wrong went wrong. With the other, it started like Splash Mountain. Except for a PDA that corrected without surgery, he cruised "pleasantly" along until they pulled out the ultrasound equipment and discovered he had also had an Grade 4 IVH. Splat! We just hit the waterfall! The IVH resolved on its own, but shortly after we got him home, he contracted RSV pneumonia and nearly died. Currently, he's the healthiest (physically) child I've got.

12:14 AM  
Anonymous deborah said...

My son Ryan was born at 34 weeks. He was normal birth weight 5lb 8oz, he was given antibiotics and he would carry on having them for 48 hours. he then had a blood test which showed he had very bad jaundice, which ment he was placed into a uv box.

Thats when everything went down hil. his temprature rised to 38.8 degrees and he was taken to nicu to be given a lumber puncture. the doctor said that we would have our son back with us in the next 15 minutes but he never returned. he was placed on a cpap to settle his breathing, so that night i was discharge from hospital as i wouldnt have been able to stay on the ward without my child.

the next day when we went to see our son he had been placed on to a ventilator and given morphine, the doctors were wating for his blood culturs to come back. the results of the blood cultures came back clear. so the doctors decided to give him a brain scan which also came back clear. they then took a chest x ray and couldnt find anything wrong with that. but whilst the doctors were doing blood gases the results came back that he had to much potassium and not enough protin. he was then given drugs to try and level it out but it didnt work. the hospital then spoke about transfering him to a differnt hospitl. i didnt no that my son was crittical until he was being moved inot another incubator to be transferd and the nurse took me to one side and said that he mite not make it inot the other incubator so would we like to give him a kiss and spend time with him before he is moved.his blood pressure had droped really low this was why he was at risk of dying.

he made it to the other hospital and he was settled his blood pressure had gone back up and we were sent home. that night tho the doctor pointed out that he could have neonatal herpes syndrome, or a liver problem.

during the night we got a phone call from the nurse who was looking after him and she said that his condition had diteriated throught the night and could we go back to the hospital. when we arrived there the doctor told us that there was nothing more they could do at this point he was on 9 infusions, and that he can die on his own without all the drugs or that he could die peacefully if we were willing to turn of the ventilator. so we decided that we would let him go peacfully. he died in my arms.

in the end a post mortem was done and it had shown he had died of neonatal herpes syndrome. me nor his farther are a carriers of herpes so to us it will always be unawnserd how our son caught the infection or why he ended up being so ill and i suppose we will never find out.

its so hard losing a child i just pray to god that it never happens again as i think that it would not only leave me heart broken but i wouldnt be able to go on with life.

9:18 AM  
Blogger neonataldoc said...

I had no idea the term "roller coaster ride" was offensive to parents, but now I do. I never meant it in a trivial or patronizing way.

Deborah, I am so sorry for your loss. This sounds trite, but try to hang in there.

3:32 PM  
Blogger Tgrant said...

I just lost my daught on April 13, 2007 at 23.6 weeks gestation. I have had other children and they were all big babies, 10 pounds. I never had a premature baby and that was the farthest thing from my mind. However, during my 13 week sono they found an ovarian cyst which was 8cm and it grew to 14cm over 10 weeks so when they finally said they needed to remove it I was already going into preterm labor. I believe that the size of the cyst and the size of the baby tricked my mind into thinking the baby was fullterm and made me go into labor. However, when Alena was born her lungs were to premature for her to breath or even for her to be helped and she died. This is the most unbearable pain that I have ever felt. I feel like there is a part of my heart that is gone and will never be replaced but reading the blogs from other parents who lost a child make me feel comfort knowing that one day the pain will become bearable but not gone completely.

7:12 PM  
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