Preemies and the price of parent empowerment

Most reviews of my book have been fantastic. Stories have started to trickle back from moms on bed rest who felt my book empowered them to help their baby even before birth. One wasn’t offered magnesium for neuroprotection, but after reading my book she made sure she got it. The other had ruptured membranes before viability and my book helped her to insist on antibiotics, steroids when it was time, and then magnesium for neuroprotection. I admit, I felt like crying.

I have received some very nice reviews, all recommending my book and an especially coveted one from a mom of a 24-weeker who happens to also be a NICU nurse (check out her review at the blog Adventures in Juggling). To me, it doesn’t get much better than that.

A few people have written they felt my book was too scary. One person who posted here said she “forbid her daughter from reading it,” and another posted on another site said it is a book “about what could go wrong”  and not for the “average preemie parent.” They were pretty venomous, which kind of hurt.

I thought a lot about what kind of book to write. There are already several memoirs about having preemies and I wasn’t sure that was what I really had to offer. I am all about practical information. That’s what most of my patients say they like about me, that I give them real-world practical information about how to get better. I just give them the information that I would want if I were in their shoes.

I didn’t want to read “everything will be okay” about a 26 weeker when my boys were in the hospital, because that is not the truth. The truth is prematurity is ugly and scary and one of the worst possible things that can happen to a family. There is no joy in seeing your baby ventilated, fed with an IV, or ultrasounded to see exactly how much blood is in his brain. Even having your baby in the hospital for a few days is traumatic. Prematurity is something conjured up by the devil to torture parents. It is the number one cause of infant death and morbidity in the United States.

Time and time again I would see bewildered parents in the waiting room not really understanding what was happening. They would ask me questions. What does a grade IV bleed really mean? Why does my baby need a feeding tube? Are those vaccines really needed? I was also grilled time and time again on the medical system. Why did you get your compounded medicine approved and mine was denied? How do I get a home nurse for RSV shots? How do I get Medicare?

I knew about the hard stuff in the NICU while I was living it. For example, necrotizing enterocolitis (NEC). I knew just how bad it was, so I followed the abdominal girths like a hawk until the major risk of NEC passed. I knew how important breast milk was in preventing NEC, so I pumped my soul out for 5 weeks for a meager 10-15 cc each time. Useless for weight gain, but invaluable to prevent NEC. I know of a family who didn’t watch like a hawk, because they never heard about NEC until the pediatric surgeon explained their baby was in multi-system organ system failure and would not survive the needed surgery. They didn’t know that the message of expanding girths didn’t make it to the right person until it was probably too late. Had we only known, they said.

I knew Victor had cerebral palsy when he was discharged home. The first physical therapist mistook his muscle stiffness for head control and was trying to tell me at 2 weeks adjusted that he had the head control of a 4 month old. I laughed, knowing she had no idea what she was doing and promptly insisted on one who did. I know parents who have worked with physical therapists for over a year before realizing they were getting bad advice. If we had only known, they said.

I hear that time and time again. If I had only known.

My best analogy is when we visited in Houston in 2005. The boys were two years old. It was just after Katrina. A huge hurricane, Katrina size in fact, was predicted to hit the city. The major of New Orleans, trying to impart how bad it really would be, advised people who were planning on staying (against government advice) to tattoo their SSN on their body so the clean up crew could more rapidly identify the remains. After a brief moment of panic, we gassed up the car, helped my father-in-law board up the windows, and watched the news to find the best route out of town, because 3 million or so other people were also heeding the call to get out of Dodge.

There was a light rain.

When a storm is coming, you don’t know how bad it will be. That is probably the best motto for prematurity. I know someone whose daughter, born at 34 weeks, has more long lasting challenges than her son, born at 24 weeks. You just never know.

I too find memoirs uplifting, and that is why I included a lot of our story in the book. My boys were born at 26 weeks and weighed 1 lb 11 oz and 1 lb 13 oz. They are now 7 years old, in first grade, and doing very well scholastically with some mild to moderate fine motor deficits and some lung issues. To me, that’s pretty darn uplifting.

Knowing your baby is at risk for NEC, and cerebral palsy,and sepsis, and…just about every other bad thing under the sun is tough. But knowing helped me intervene and get them the best outcome possible. You get early intervention earlier is you can identify the problem and articulate your request in terms doctors and bureaucrats can understand. To help counteract the difficult statistics, I share advice on how to dial down the panic with mind body techniques. Something I wish I had practiced more often.

I think if you really want empowerment, which I do, there is a price. With the good comes the bad, and the ugly. But if the storm turns out only to be a light rain?

How great is that.

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9 Responses to Preemies and the price of parent empowerment

  1. Melissa says:

    I haven’t read the book yet – it’s in my queue :-) But I also believe that knowledge is power. That is why I was a good match with my MFM, who talked me through just about every case scenario when I was diagnosed with mono/mono twins. He also urged me to meet with the NICU Chief, ask him questions about complications at different gestational ages and visit the unit. Now, I totally understand that most people don’t get the benefit (?) of advance notice when they have a preemie, but I was grateful that I knew as much as I did. It made me a better advocate for my baby.

  2. Estelle says:

    Your post takes mes back 3 years early. Our daughter was born 6 weeks early, at 34 weeks, and stayed at the NICU for a month. This was the hardest month of my life. I felt like I such a failure, for not having been able to keep my baby in my womb until she was ready, for not being able to be a good advocate for my daughter with the nurses (some great, some awful). I was experiencing all these emotions and there was nobody around me to let me know it was OK to feel what I felt. Thankfully, somebody recommended I read the Premature Baby Book from Dr Sears. While I am not a big fan of Dr Sears, the book had helped tremendously (Dr Sears once worked at a NICU). How I wish it had been handed to me in the delivery room!

    One thing I wish we talked about more, is the way parents feel when their babies are at the NICU. There is no word to describe how hard the separation is. I wish parents of preemies really received counseling at the hospital.It’s not all pure happiness once you bring baby home – that’s actually when I developed postpartum depression (I later found out that mothers of preemies are at higher risk of having post-partum depression, isn’t that something worth mentioning while baby is being discharged?).

    The worse part of our story is that the NICU doctors withheld to mention our daughter carried a chromosomal abnormality, which a geneticist told us about 2 months later. They knew about the issue on the day she was discharged and, for some reason, decided not to tell us anything. I was so angry for so long, that, after a year, I decided to complain to the hospital where our daughter stayed for a month. I wrote 5 pages. I did get a letter of apology, but I really hope preemie moms are better treated in the hospital because I opened up.

    I am sure there are people who find your book or any book on pregnancy, really, too scary. The reality is, not all pregnancies go well, a lot of bad things can happen, but taking on the responsibility to create a life also means accepting to face the risks associated with that endeavor. Having a baby is not all about cute onesies, teddy bears, and matching nursery decor.

  3. Amy K says:

    I just interviewed the head of the preeclampsia foundation. She told me: “you can’t scare someone to death with information. But you can die from a lack of information.” the same goes for the parents charged with caring for preemies. That woman who forbid her daughter from reading your book had it all wrong. By keeping her daughter “protected” from uncomfortable information, she is robbing her of the opportunity to be an effective advocate for her preemie. Even the best hospital makes mistakes — mine neglected to store my colostrum properly and it spoiled before penny ever got it. Information is our most powerful weapon as we fight for our kids’ lives — I wish your critics understood that.

  4. Jennifer Gunter says:

    Thanks so much for posting. That is a great quote and certainly one I live by. Being well prepared is the best defense.
    Thanks for sharing.

  5. Jennifer Gunter says:

    There is no excuse for not knowing information shortly after your doctor’s receive it! I am so sorry that happened to your family.

    The separation is terrible. Those are emotions I hope I never have to feel again.

  6. Estelle says:

    I really think the doctors we dealt with let the geneticist do the dirty work. Oh, and I forgot to say that on the day my daughter was discharged, one of the doctors told me she wanted to get another job, because the shifts were too tiring for her!!!! I just felt like running away, how unprofessional is that?! But anyway, we cannot change the past and energy is better spent trying to make the present better. Have you reached out to La Leche League and let them know about your book? They are the ones who recommended the book on preemies (and the only ones who ever put any sort of preemie literature in my hands!). I would also imagine that individual NICUs might be interested in your book. After all, my ob/gyn practice gives a pregnancy book to every mom-to-be, so why would’nt NICU do the same?

  7. Kylie Hodges says:

    I haven’t read your book, but will now. When my son was born at 27 weeks, I knew quite a bit about premmies, as I had supported friends with premature babies and done some volunteer work. Also I worked for a health insurance company authorising treatment, and knew a lot about intensive care protocols.

    The staff in NICU found me a complete pain in the backside. I questioned, I challenged, I downright argued. I was a complete nuisance, but I HAD to be, he was my son.

    I was given woeful information about decisions, I had no input in Joseph’s day to day care, I had to kick up a complete stink because the doctors wanted to do a spinal tap that I felt was unnecessary (I won) it was a hideous time of my life.

    I was given ridiculous prognoses without evidence. I was told my son would need to be PEG fed, probably for life.

    I am happy to report my former 1lb 7oz dinky dot is now a happy 17 month old, almost walking, and ate cheese and onion pie with vegetables followed by chocolate cake – no tube required!!!

  8. Peggikaye says:

    My child was not a preemie (both my kids were stubbornly late). But with the youngest, we knew from within minutes of his birth that something was wrong.
    My sons case is unique and there aren’t many out there with his particular set of issues. There are no support groups and very little information … we had no way to find out what to expect.
    I’d have been thriled (would have been? STILL would be and he’s 18!) to have a book that could tell me what might be expected and how to get through it. I’d have gleaned what applied to me and prayed for the worst case to not be a part of it (but so grateful for the information if one *did* apply to HAVE the information!)

    Sometimes knowing the possibility of the path we’re on, gives us the needed road map to avoid the hazards of that road.

  9. R says:

    I loved your book. It had exactly what kind of information that I was looking for. My twenty six weeker is nine months chronologically. She is developmentally delayed. Because I read your book, I got her involved in early intervention as soon as she came home from the NICU with torticolis. Otherwise, I would have “watched and waited” and silently hoped that she “would catch up by two”. That may not happen but I am more prepared to deal with it. I asked the hard questions and learned about them. She now has the best chance of it happening with the therapies. I can’t thank you enough.

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