Tag Archives: Family experience

Why I joined the NIDCAP Federation International

Jennifer Degl

Jennifer Degl

I joined the NIDCAP Federation International in 2017 after attending their annual NIDCAP Trainers Meeting in Edmonton, Canada.

NIDCAP stands for Newborn Individualized Developmental Care and Assessment Program and the NFI stands for the NIDCAP Federation International.

When babies are born too early or medically fragile, they are forced to spend the first months of their lives in a hospital, instead of in the comforts of their home. In the Neonatal Intensive Care Unit (NICU), these babies are kept in a plastic box and attached to tubes and wires, all of which make them extremely uncomfortable. Many of these tiny babies also experience a great deal of pain due to medical procedures and surgeries. Research shows that the NICU stimuli may interfere with a baby’s normal neurological development, and can cause a myriad of issues as the child grows.

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Jennifer’s daughter at 3 days old

My daughter was born at 23 weeks gestation in 2012 at just 575 grams (1 lb 4 oz) and was not even as long as a ruler. She spent 121 days in the NICU and endured more pain and medical procedures than most healthy adults experience in their entire lifetime. I would have given anything to reduce her pain and keep her comfortable during her time in the hospital. The practices of NIDCAP and the NFI would have been so helpful to me back then, if I only knew they existed.

While my daughter had excellent care during her four months in the NICU, I was very much a bystander. I watched from the sidelines as her medical team changed her diapers, washed her and performed many basic care activities that I now know I could have been a part of. It wasn’t until a week or so before her discharge that I was able to really begin to care for my baby. As a seasoned mother of three boys, this was so upsetting to me because I had been used to caring for my babies myself, and I felt as if I was failing my daughter and not bonding with her as I should have been. I didn’t even feel like her mother.

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Jennifer’s first time holding her daughter at 1 month old

My daughter was just over one month old when I got to hold her for the first time. This kangaroo care session took about 20 minutes to set up, and even though it only lasted for approximately 5 minutes before she was desatting and the nurses took her off of me, it was this moment that my motherly instincts kicked in and I finally felt our bond.

Our experience during her first month of life has always haunted me. I wish I was able to hold her sooner, comfort her when she was in pain and participate in her care activities from the very beginning. We were strangers to each other and the hospital staff was her “mother” for the first few months of her life. While I will always be grateful to them for saving her life and caring for her, I will never get over the guilt of not participating and bonding with my daughter from the beginning.

These feelings of guilt and the trauma associated with my high-risk pregnancy and premature birth is what compelled me to write a book about our experiences. I wanted other families who were suffering through a similar situation to know that others have walked in their shoes and are now flourishing. Publishing the book opened up a whole new world to me and I slowly moved into advocacy and have traveled the country sharing my story and our family’s experiences to create positive changes in both maternal and neonatal health. This is how I learned about the NFI and NIDCAP. Another family advocate for NIDCAP contacted me and shared what the organization is about. It immediately seemed like a perfect fit.

nidcap lessons croppedThe goal of NIDCAP is to ensure that, one-day, all infants and families in intensive and special care nurseries will receive individualized and developmentally supportive family centered care. This is what I wanted for my daughter and wish for future premature and medically fragile babies.

Jennifer with Mandy Daly and Sandra Kosta at the 28th Annual NIDCAP Trainers Meeting in Edmonton, Alberta, Canada

Jennifer with Mandy Daly and Sandra Kosta at the 28th Annual NIDCAP Trainers Meeting in Edmonton, Alberta, Canada

The 2017 Trainers Meeting was so impressive that I decided to become involved in any way that I could. You can read my blog post on that meeting by visiting https://www.speakingformomsandbabies.com/nidcap-trainers-meeting-2017/.

NIDCAP has graciously taken me in and I have slowly been getting to know many of the other members. I am looking forward to sharing my experience and time with NIDCAP and I hope to contribute to advancing their reach.

I am a proud member of NIDCAP Federation International.

March 20, 2019 we will be celebrating the first World NIDCAP Day. Please visit the NIDCAP website at www.nidcap.org to learn more about what NIDCAP has to offer and how they support healthy development of newborn babies.

-Jennifer Degl

Jennifer Degl is the mother of four, including a micro preemie who was born at 23 weeks gestation, and the founder of Speaking for Moms and Babies, Inc., that aspires to spread awareness and educate the public on maternal and neonatal health issues. She is also the author of two books, an active member of The International Neonatal Consortium, the Preemie Parent Alliance, and NIDCAP Federation International, and she serves on The Board of Directors of The Morgan Leary Vaughan Fund, which is dedicated to preventing Necrotizing Enterocolitis in premature babies. Jennifer also regularly contributes articles to various online communities including Huffington Post Parents and The Mighty. You can learn more about Jennifer at https://www.speakingformomsandbabies.com.

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Why Partnering with Parents in the Neonatal Unit is the Key to Everything

Nadine Griffiths, RN, MEd

Nadine Griffiths, RN, MEd

Admission to the neonatal unit occurs during a sensitive period of development. The first 1,000 days of life from conception to age three is considered an open and critical, singular window of opportunity (UNICEF 2018). During this period, children’s brains can form 1,000 neural connections every second, this period of rapid neurodevelopment occurs at a once in a lifetime pace which is never matched. The connections formed are considered the building blocks of every child’s future, contributing to children’s brain function and learning, they lay the foundation for their future health. A lack of nurturing care during this period which includes adequate nutrition, stimulation, love and protection from stress can impede the development of these critical connections. The importance of this period of development is highlighted in a UNICEF global promotion known as #earlymomentsmatter. For babies in the neonatal unit the buffer against known stressors in this setting and the source of consistent nurturing care is their parents.

Parents make not only ‘a’ difference, they are ‘the‘ difference and biggest influence on outcomes of neonates who experience an NICU stay. Recent research has found that increased holding of babies by parents in the neonatal unit is related to better reflex development at term, with parent skin to skin holding increasing infant reflexes and gross motor development at 4-5years of age (Pineda et al 2018). The authors of this research suggested these findings highlight the importance of engaging families in the NICU.

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Father supporting his baby in surgical intensive care

Yet parenting for both mothers and fathers in the neonatal unit is a unique and challenging experience. Researchers have found that up to 64% of mothers in the neonatal unit experience psychological distress both within and beyond the NICU. With mothers who experienced psychological distress demonstrating less confidence in parenting than mothers without psychological distress (Harris et al 2018). Whilst fathers in the neonatal setting have described parental role alteration, infant appearance, NICU environment, and staff communication as stressors (Prouhet et al 2018). Universally engaging parents during their NICU hospitalization is seen as a strategy that improves parenting confidence and reduces parental role alteration. Family involvement is essential to facilitate early and long lasting positive effects on their baby’s physical, cognitive and psychosocial development (Craig et al 2015).

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Partnering with families on a Developmental Round in PICU

Whichever philosophy or model of care is utilised in your neonatal unit, parents should be at the centre of all you are trying to achieve. NIDCAP is a model of care that has been partnering with parents for the past 36 years. NIDCAP Certified Nurseries, Professionals and Training Centres are focussed on supporting relationships between neonates and their parents, health professionals and parents within system in which we both exist. We recognise that what works for us as healthcare professionals and the families may not be the same thing. For staff engaged with NIDCAP the neonatal unit is seen as the families’ space, when we enter we are walking into their home, this place is their everyday, it is where their baby lives, sometimes it will be the only space where they are existing.  These concepts remind us to respect babies and families by the way we behave, speak and go about our day in the NICU, encouraging us to support them and the connections they would foster in a home environment. Families should not be made to conform to the rules or language of a hospital system instead we need to make the system work for them, for each different family and their diverse needs. This approach requires a commitment to understanding the needs of infants and families, whilst investing in staff and a culture which seeks to embrace and support parents in an environment that they may have never heard of or imagined.

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Siblings welcomed in the surgical NICU setting

Recently the ‘Eight principles of patient-centred and family centred care for newborns in the neonatal intensive care unit’ has been promoted by clinicians in Europe (Roué et al 2017). The authors advocate additional research or evidence is not required to implement these strategies due to the breadth of the existing body of evidence. Unsurprisingly the first principle recommended is free 24 hours a day parental access with no limitations due to staff shift or medical rounds. We would argue that this should be extended to siblings, as parents often struggle to meet the needs of a toddler or child and their baby in the neonatal unit. Asking them to choose between their children’s needs is cruel and as evidenced by the literature and lack of infections related to sibling access in the neonatal setting unnecessary (Horikoshi  et al 2018). Infants’ and families’ needs during the neonatal period are viewed as universal; therefore, an effort to implement principles that engage families and support them within this setting is needed in all units and countries.

Adopting a philosophy where we learn from parents and their experiences in the neonatal unit is essential when developing services to meet current and future needs. Hearing what parents have to say of their time in the neonatal setting can be unexpected, unsettling and challenge the beliefs you hold in relation to your own practice and the service your unit provides. The experience of being open to and learning from parent’s experiences offers an incredible platform for personal, professional and unit development.

Some of the lessons I have learned personally as a nurse in the neonatal unit from families about how we can place them at the centre of caregiving include:

  • My job is to advocate for you and your family on a journey that is uniquely yours
  • We all have work to do, this is not about perfection
  • Little things to me, might mean everything to you
  • Not every family wants or needs the same thing, they should all be offered the same opportunities and respect
  • Celebrate everything the big, the little, the in-between – life is too short
  • You the mum, the dad, the baby can teach me (the healthcare professional)
  • These babies in this place are always yours, my job is to support you in an environment that is unfamiliar and often unimagined
  • We all have good and bad days, we can be at our best or our worst, tomorrow is another opportunity to try again
  • Saying I am sorry this is terrible, means more than trying to justify something
  • Perspective is everything and we are all coming from a different direction
  • Telling a family to take a break and get some rest doesn’t help them. Getting a comfortable chair, a glass of water or cup of tea and a blanket not asking them to go anywhere means more
  • It is rare to be untouched and unaffected in the neonatal unit as either a parent or staff member. We all carry different pieces of our journeys or those journeys we have witnessed with us – what we see changes us.
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NIDCAP Trainer working collaboratively with a family

As health care professionals we are in a unique position to learn from parents and their babies, where ultimately our role is to advocate for caregiving in partnership with and led by them. Placing families at the centre of quality improvement activities, research, staff training, clinical guidelines, practice initiatives and all that we do in the neonatal unit is the key to our success. We are responsible for what families achieve during their journey and beyond the neonatal unit. Asking ourselves how we can continue to improve their experience and learn from them is something we should ask ourselves before every interaction and at every opportunity.

 

Nadine Griffiths
Clinical Nurse Consultant
NIDCAP Trainer, Australasian NIDCAP Training Centre

 

References

Craig JW, Glick C, Phillips R, Hall SL, Smith J, & Browne J (2015) Recommendations for involving the family in developmental care of the NICU baby. J Perinatol. 35(Suppl 1): S5–S8.

Harris R, Gibbs D, Mangin-Heimos K, & Pineda R. (2018) Maternal mental health during the neonatal period: Relationships to the occupation of parenting. Early Human Development 120: 31–39

Horikoshi Y, Okazaki K, Miyokawa S , Kinoshita K , Higuchi H, Suwa J, Aizawa, Y &Fukuoka, K. (2018), Sibling visits and viral infection in the neonatal intensive care unit. Pediatrics International, 60: 153-156. doi:10.1111/ped.13470

Pineda R, Benderc J, Halla B, Shaboskya L, Anneccaa A & Smith J (2018) Parent participation in the neonatal intensive care unit: Predictors and relationships to neurobehavior and developmental outcomes. Early Human Development 117: 32–38

Prouhet PM, Gregory MR, Russell CL & Yaeger LH. (2018) Fathers’ Stress in the Neonatal Intensive Care Unit: A Systematic Review. Advances in Neonatal Care. 18(2):105–120

Roué J-M, et al.(2017) Arch Dis Child Fetal Neonatal Ed;102:F364–F368. doi:10.1136/archdischild-2016-312180

UNICEF (2018) Early moments matter https://www.unicef.org/media/media_94378.html

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What NIDCAP meant to my NICU experience…

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Latoshia Rouse

Just 7 days earlier, I had an OBGYN visit. After a great visit, I asked other moms of multiples if they thought I would make it to 36 weeks. My doc seemed very confident that I would, but I wanted to talk to moms who had accomplished it. We laughed and giggled at the possibility of me breaking the record for triplet birth weights. Everything was going great! This day I was super tired. I was beginning to struggle with standing for short periods of time. I was seeing the toll this pregnancy was having on my body. I decided to lay down and rest, but I needed to go to the bathroom first. Once I got in there, I realized my water had broken. Within an hour I was in the emergency room. I still was not sure what all this meant, but I knew I was not going back home until I had them. I had a 3 year old at home and I was not able to be with him. I was so torn. Everything was messed up. My body was failing the babies I was carrying and I was not able to parent the baby that was here. This was a Tuesday and after the steroids/ magnesium, I delivered my babies on Friday morning. They were 26 weeks 6 days. 2lbs 10oz, 2lbs 8oz, and 2lbs 3oz of perfection. It was a whirlwind. I had 4 kids. From 1 kid to 4 kids in about 29 mins. Continue reading

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When Life Gives you Lemons: A Personal Story from Bulgaria about Pregnancy, Birth, Loss & Family, Part 2

Nina Nikolova head shot 2

Nina Nikolova

In 2008, following the deaths of my children, I went home from the hospital feeling empty and broken-hearted. I simply wanted to close my eyes and die. I physically appeared to look pregnant and friends continued to enquire after the well being of my babies. I did not have the mental strength to deal with the reality of the situation and my husband was left to field the well-meant enquiries.

A number of months later we decided that we were strong enough to try for another pregnancy. The desire to have a family was so strong yet despite not being emotionally ready, we found the strength to embark on another pregnancy journey. Unfortunately the ICSI attempt failed and we had to face the stark reality of waiting for 12 months before we could try again (in Bulgaria families must wait 12 months between fertilization attempts).

Returning to work proved more difficult than I anticipated. While my friends and colleagues so dearly wanted to support and help me, they didn’t know how to speak with me, what questions to ask, or what I needed to help me in my grief. Continue reading

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When Life Gives you Lemons: A Personal Story from Bulgaria about Pregnancy, Birth, Loss & Family, Part 1

Nina Nikolova head shot 2

Nina Nikolova

It was the summer of 2008 and I spent the most wonderful vacation carrying my twin baby girls. At our 21 week antenatal check-up upon our return to Sofia the doctor flagged a “small” problem: one of the babies didn’t appear to have enough amniotic fluid and the doctor recommended frequent checkups and bedrest.

Nina pregnant with her twin girls

At week 22, I experienced some minor bleeding and went to the emergency room of the hospital. I spent two very difficult weeks on total bedrest in the hospital; resting alone in bed and praying. I had some visitors, but the only thing that was important to me was to hold my babies inside of me as long as possible. Continue reading

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An Irish Mother’s Journey: Preterm Birth and Beyond, Part 3

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Mandy Daly, Dip. H Diet & Nutrition, Dip. Ki Massage, ACII, DLDU

Leaving the secure if somewhat claustrophobic bubble of the NICU after three months was tinged with many conflicting emotions. We so desperately wanted to be a “normal” family, yet in our hearts we dreaded the day that the enormous responsibility of caring for our daughter would be placed on our shoulders alone. Our parenting journey to date had been filled with medical emergencies, medical interventions, enough medical personal to fill a football team and very little family time to enable us get to know Amelia.

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An Irish Mother’s Journey: Preterm Birth and Beyond, Part 2

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Mandy Daly, Dip. H Diet & Nutrition, Dip. Ki Massage, ACII, DLDU

My perceptions of motherhood prior to the birth of Amelia were filled with moments of touching, loving, holding, breathing in her smell, caressing and caring, however, the reality that I was faced with was so very different. For three months I traveled 90 minutes each way to spend 12 to 14 hours sitting at my daughter’s incubator. There was very little touching or caressing her tiny frame. The only smells detectable were the smells of the hand sanitizers, the hand wash soaps and the unit’s cleaning products. I didn’t get to hold Amelia until she was four weeks old even though my baby girl lay inches away from my tear stained face. I reached out to her in my head and heart and I’m certain that you could hear my heart beating in my chest every time her monitor alarms triggered.

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NICU Parent Involvement is Crucial to Outcomes

Deb Discenza, mother of a premature infant and Head of PreemieWorld

It was September 7, 2003 and I had been on bed rest for a little over a day. The day before I had been in a car coming back from an extended family outing when I felt my bladder let go in the front seat. Embarrassed, I said nothing, but quietly asked my husband, Gregg, to get to the nearest bathroom. All alone in a grocery store bathroom, I discovered that my water had broken. With tears streaming down my face, I apologized to my daughter in quiet hysterics and then frantically called family members in the car only to get voicemail after voicemail message. So I cleaned up as best I could and headed to the front of the store, stopping in at the office and in a surreally calm voice relayed and asked, “I believe I am in preterm labor. Where is the nearest hospital? May I borrow your phone to call my doctor?” Continue reading

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An Irish Mother’s Journey: Preterm Birth and Beyond

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Mandy Daly, Dip. H Diet & Nutrition, Dip. Ki Massage, ACII, DLDU

May 2006, strolling along the sun-kissed shores of the Indian Ocean, having spent 16 glorious days on the beautiful island of Mauritius, I turned to my partner, John. No longer could I keep the secret that I had been saving for the “right moment” and announced that we had a much longed for baby on the way. This news was the icing on the cake for what had been a wonderful year for us as a couple and now we had a bright future to look forward to with a child of our own. We returned to Ireland filled with excitement and looking forward to the pregnancy and our new roles as parents. For the next nine weeks my pregnancy was a mixture of day long “morning sickness” followed by periods of extreme fatigue, but nothing could dampen the joy and love that we felt for our growing infant. Continue reading

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