PreemieWorld CEO Deb Discenza sits down once again with Paragon’s Director of Marketing, Bri Ziganti, to update the SafeBaby team and readership base on current events in the NICU universe.

preemieworld is expanding parental supportDeb Discenza is the CEO of PreemieWorld, co-author of the popular book “The Preemie Parent’s Survival Guide to the NICU,” and mother of her own preemie, Becky.  Deb has made it her mission to bridge the gap between the families of patients and the medical professionals who care for them.

She generously met with me once again to talk about how she’s expanding parental support to include families with older preemies, and offer her opinions on current events in the NICU industry.

“Last time we spoke, we talked a lot about your own birth experience with your daughter, Becky, as well as some challenges that she faces from being born too early.  Can you update me on her progress?”

“The second I held Becky I noticed I had a very alert baby,” Deb began.  “From a very early age she’s been alert and bright.  I knew she’d grow up to be a smart girl, but it still took a long time to understand her.  We didn’t know where things were going to go, but while she was a developing toddler, we were simply thrilled that she was walking and talking and could write her name.”

“By the time she entered into kindergarten, it was clear she had a mild form of autism,” she continued.  “But no one, not one of our doctors, ever explored this possibility with us, so it was a very difficult thing to be sure of, and to communicate to her teachers.”

“On the one hand, we had this brilliant little girl reading far above her grade level.  At first glance, you might not think there was much to worry about.  But looking back, I can see the early signs we didn’t catch.  She was so focused on books, she was having relationship issues.  The other kids didn’t want to be around her, and she was withdrawn.  She preferred her books to social interactions with people.  By kindergarten, she was labeled as ‘developmentally delayed,’ but I knew there was something more going on.”

“That must have been frustrating,” I said.  “Did the school do anything to help you pinpoint her issues?”

“For a while, the school actually wanted to discontinue the development program she was in, because she was so advanced intellectually.  However, some of the teachers noticed her difficulties with the other children, and felt it was more than just shyness or slightly slower development.  They wanted to do a psychological and social work up to really dive in.”

“Well that sounds encouraging, that they were so focused on getting her the right learning tools,” I said.

“Yes, they were very helpful.  It was nice to finally feel like someone in an authoritative position was taking notice.  I couldn’t help but think to myself though, you know, ‘How did this discussion happen only now?’  Still, the school was wonderful, and after a full battery of tests, they diagnosed Becky with a form of Asbergers.”

“Was that difficult to hear?” I wondered.

“As a parent, it’s certainly always upsetting to get any sort of diagnosis like that for your child.  But I kind of knew it was coming.  Becky had attention span issues as well as social issues, so the combined diagnosis just seemed to fit.”

“I understand now why the autism community uses a puzzle, because it was all about putting the pieces together,” Deb continued.  “That formal diagnosis allowed us to get the help she needed.  I didn’t know there was a spectrum or what the spectrum meant.  After we got real answers, the path forward became less of an unknown.”

“So after you received this diagnosis, what types of treatment did Becky require?”

“The two most important things to me were getting Becky more comfortable in social situations, and addressing her feeding and coordination issues.  I felt that both of these things would hold her back from really participating in the world as a successful adult, and I wanted to give her the tools to make her own way.”

“She has developmental motor control disorder, which is a coordination issue, and plays into her problems with eating.  And funnily enough, her aversion to eating played into her social issues.”

“How so?” I asked.

“Well, at lunchtime, the other kids noticed she wasn’t eating.  Meals are very much a social bonding activity, so by not participating, it made her even more ‘different’ than she already was.  I don’t think her classmates intentionally stopped to think that she was ‘weird,’ it was just an unconscious reaction to one of those unspoken social rules.  By teaching her to eat properly, I knew we’d have an easier time helping her overcome her other obstacles.”

“Where did her food aversion stem from?” I asked.

“Well, the DMCD played a part in that, but I think what really caused it was the severe reflux she had as a newborn.  Many preemies are born with underdeveloped tummies, and she’d throw up a lot of what we’d try to give her.  She kind of learned to dislike eating.”

“Many people with autism have trouble with ‘picky eating’ because they have texture and sensory aversions, and a fear of deviating from a routine,” Deb said.  “She was totally afraid to try new foods.  So we were starting from a very difficult place.”

“But you eventually overcame her issues with food?” I asked.  “Can you explain the process?”

“We got her into therapy right away.  Some parents may try to help their child on their own, and that can work for some families.  But really, we knew that bringing in a professional was going to make this process so much easier.  We wanted someone with experience in navigating feeding issues.”

“What I found most helpful was putting the therapy into terms that my child could understand.  We gave her choices, and we tried to make eating fun.  We took her to apple farms so she could pick her own food, and we involved her in preparing meals.  Becky really responded to that.  I think it made food less of an unpleasant thing and more of an experience she could look forward to.  Instead of telling her ‘You need to do this because I said so,’ we told her why it was important that she learn to eat.  We asked her if she enjoyed spending time with her friends, and told her how working on these issues would make it much easier for her to participate in things she was missing out on.  She likes being involved, and explaining therapy to her in that way made it something she could get behind.”

“However, I will say that it’s important for parents to still be the ones in charge.  They should be involved, but you have to lead, because your kid may not always want to do the work, but they need to.  It’s your job to make sure they do the exercises so they can progress.”

“What else should parents be aware of, during therapy?” I asked.

“Therapy isn’t immediate.  And just because it takes a while to see results, doesn’t mean it’s not working.  This was a big obstacle and it took 12 years to overcome.  Don’t be discouraged, try to see it as a process that your family needs to complete.  You need to stay diligent, and don’t be afraid to go to professionals.”

“Where is Becky now in her development?”

“My daughter is doing wonderfully,” Deb said happily.  “She’s learned to play the flute, and continues to surpass what we thought she’d achieve.  She’s fostered friendships with many different types of people.  Watching her interact with people with disabilities is especially rewarding, she has a patience with them that’s just so mature.  As rough as this experience was, it’s such a joy to see her love without stigma.”

“There’s a lot of support for parents while their children are still in the NICU, or still young babies, but as you know, a lot of that support ends after the child’s first birthday.  Do you have any advice for parents of older preemies?”

“Oh yes, it’s very hard to find support systems for older children,” Deb said.  “After leaving the NICU, parents feel like they’ve dropped off the earth.  They just don’t have the same kind of concern and care shown to them in the hospital.  PreemieWorld provides support to over 25,000 parents worldwide, and I can tell you that every single one of them say one of the hardest things about the situation is learning to adjust everything in their lives to accommodate their child’s needs.”

“They’re seeking help because there’s a variety of things going on, and everything’s dramatically changed.  Marriages are often challenged.  If their preemie has special needs, that can be difficult to accept.  The death of a child or the death of one sibling in a multiple birth is a really hard thing to come back from.”

“Why do you think so many parents come to you?” I asked.

“Oh that’s easy,” Deb answered.  “They’re trying to find people that understand their experience.  When you have a premature baby, you suddenly realize that the rest of the world just doesn’t understand, not the way you need it to.  Any major health situation- like cancer- no one really understands that experience until they’ve lived through it.  There’s this pervasive idea that the baby just needs to grow and go home, and once they’re out of the NICU, they’re out of danger, the nightmare’s over.”

“Unfortunately, that’s not true for a lot of families.  There’s a belief that parents who continue to worry about their child’s health are being hysterical, and it’s a belief that really hinders the family’s healing process.  Medical professionals do their best to prepare parents for the ‘real world,’ but rates of rehospitalization is high.  It’s very common for children to develop issues long after being discharged.”

“What are some concrete reasons that parents should seek out support beyond their own family?”

“Once the parents go home, it’s not over.  But they’re largely alone.  They’re trying to come back from a tough situation.  Babies can sense a parent’s stress, and when the baby gets stressed, new medical situations can arise.  It’s best to have an empathetic network to fall back on.”

“The internet is a great resource,” Deb continued.  “I’ve had so many older parents tell me that back when there was no internet, they couldn’t find anyone to talk to, it’s not as easy in person as one would think.  It’s also important to recognize that there are groups of parents that want to talk, and those that want to move on.  I’ve seen that over time.  I’ve found that consistently, parents who want to move on can’t without support.  They get stuck, they suffer from post-partum and PTSD.  That’s a huge issue for both parents, not just the mother but the fathers too.”

“There’s a huge need for mental health care in and after the NICU, but many hospitals and communities don’t have the resources available.  I believe these relationships and premature kids have a higher chance of surviving and a healthier environment as a whole when they’re offered an effective support network.  There’s a parental sense of failure, guilt, and shame involved in having a preemie.  Most often, the parents did nothing wrong.  It’s just circumstances.  But there’s a stigma about not having a perfect pregnancy.  They have to work through not having the birth experience they thought they would, while recovering from the pregnancy and caring for a sick child.”

“People want to feel validated.  They want to have permission to break down, to talk about their guilt, to not worry about offending someone or being shamed.  They may need to feel angry with themselves and not be judged for it.  As inappropriate as it is, those feelings are all there.  My job is to make parents understand they’re not alone.  They need to be told that it’s okay to be sad or angry or even happy, all emotions are allowed and totally fine.  They deserve to be heard and validated as a parent.  They want to be appreciated.”

“Do you think this stigma is perpetuated by the intense focus the media has on any celebrity pregnancy?” I wondered.  “It seems like famous families are scrutinized with a microscope during the entire process.  Even if a celebrity has a preemie, it doesn’t seem like they’re allowed to be anything but positive about it.”

“I think the media does a real disservice to preemie parents in this regard,” Deb agreed.  “Celebrities need to be better about it.  Don’t get me wrong, like I said, it’s okay to feel how you’re going to feel about your situation.  It’s okay to be positive.  But I think more of these moms and dads should be open about their preemie, not downplay it.  It’s true that they run the risk of getting chastised, but let’s face it, the public will latch onto nearly anything a celebrity does and criticize them.  It’s not like they’re unused to negative reactions.”

“Every famous mother you see on the tabloids, she’s in the spotlight throughout her pregnancy.  Everything she does is analyzed.  That has to be a very hard thing to deal with.  They have to be afraid of being seen drinking a coffee because they’ll get backlash from anything that might hurt the baby, no matter how ridiculous.  And then, if it turns out the child is born premature, the press is all over it.  I think it would be inspiring for them to own it, to give these other families a relatable role model.  I would like to hear them say that it’s okay to be human.  That would be very reassuring, I think.”

“Up until now, SafeBaby has been primarily focused on clinical applications.  However, we recognize that there’s a need for more parental support and involvement.  Parents play a very big part in their child’s recovery.”

“We are considering the creation of a phone app for parents that would allow them to see reports of when their child was fed, scan bottles of breastmilk to see the expiration date, and schedule milk drop-offs.   We want them to be involved in their child’s care even when they can’t be there physically.  Do you think there’s value to such an app?  Can you suggest any additions that would be useful to parents?”

“In my opinion, an application like that would be useful!  Allowing a parent to communicate with staff is huge.  It would go a long way towards giving the parents a sense of control, on more intimate terms.  After all, parents are always a part of the NICU team.  They have to take over care after they leave the NICU.  Anything that can help them with care is a plus.”

“In terms of design, I think reaching the common denominator is important.  Some people don’t have phones, some use tablets, so tech should be versatile.  I think the success of a program like this also depends on whether staff will follow through and answer parent communications.”

“On the whole, I think it would be a great way to help the parents and the professionals plan out their treatment and feeding schedules.  Nurses need to know when the mom can provide them with expressed breastmilk, and parents want to be able to give input on care, since they know the baby best.”

“Recently, a very encouraging study was published showing that growth results from Medolac donor milk were consistent with growth from a mother’s milk.  Do you see the donor milk industry expanding in the next few years?  What is the perception towards donor milk in the parent community?”

“Parents are so grateful for donor milk; obviously, they’d like to use their own milk if they can, but that’s not always possible.  When their supply dwindles, it’s a great resource,” Deb answered.

“But with that blessing comes challenges,” she continued.  “Who do we go to and trust to get this milk?  I think it’s truly all about the screening, that’s so important.  My biggest concern is unofficial, unprocessed milk sharing between moms.  Sometimes, women have to rely on strangers to get breastmilk, and it’s scary because there’s no way to know the donor mother’s medical background or test for any diseases.  That’s why I think an industry partner using testing and pasteurization is probably the best choice.  Before using donor milk, hospitals should be asking themselves, ‘does this company do right by the baby?’  It’s important to do your research and choose milk from a reputable source with the proper protections in place.”

“The recent outbreaks of the Zika virus have been a source of concern for many hospitals and parents, especially those that are using donor milk,” I said.  “What do you think hospitals should do to reassure parents that their baby is safe?”

“In my circles, parents are not talking about Zika much, mainly because they aren’t depending on donor milk.  But as far as professionals go, it’s very much on their radar.  I think the most important questions to ask are finding out how the donor milk they use is evaluated.  There are babies out there that need donor milk.  Many preemies cannot survive on formula with NEC risks.  My concern lies with testing standards- I think donor milk companies need to have very firm policies that ensure the safety of the patient.  A tracking system like SafeBaby that checks batches against a donor database would be beneficial.”

“When we were in the NICU, my daughter didn’t need donor milk, but she did need a blood transfusion.  There was no time for us to donate or provide a donor we knew, they needed the blood right away.  We had to use the donor blood they had on hand.  We depended on that donation and the hospital’s validation process to protect our baby.”

“What about when a mother can provide her own breastmilk, but it’s lacking in protein?  What are your thoughts on the recent advancements in protein analysis of breastmilk and protein fortification?”

“I don’t have the full sense of it yet, but the Calysis analyzer is an interesting development.  I look forward to hearing about it as the studies come out.  In my opinion, the more information you have to help that baby, the better.  It’s just common sense.  The more you can do, well, why would you not?”

“Analyzing breastmilk to determine whether it needs additional fortification is a very creative medication and treatment.  When Becky was in the NICU, they fortified the milk she ate, but there was no real justification for it.  In my mind, the more information you have about what’s going on with the breastmilk, the better decisions you can make.”

“Anything we can do to help now and later is key,” Deb continued.  “It’s not just about the NICU.  Long term studies are important.  The mothers have created this incredible nutrition for their babies.  If the hospital can improve on it, make it easier for preemies to gain weight and leave sooner, then that’s something that needs to be investigated.”

“At the end of the day, it’s all about feeding that baby.”

Deb Discenza is the author of “The Preemie Parent’s Survival Guide to the NICU,” and of the popular PreemieWorld blog.  Thank you, Deb, for your continued support and partnership with SafeBaby!  We are honored to know someone so focused on building a parental network for preemie families.

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