Our third pregnancy and fourth child…I have started to feel him move! I’m 22 weeks and 5 days. It is hard to believe Claire and Mary arrived just one week from today when I was pregnant with them. The small flutters of movement hit me at different times, mostly when I’m waking up in the morning. Everything feels as it should at 22 weeks except that our son, William Richard, has been diagnosed with Trisomy 18, a chromosomal abnormality with an extremely poor prognosis. You can learn more about Trisomy 18 here. 

We hadn’t planned to get pregnant again. We had already been through a difficult journey welcoming our identical twin girls at just 23 weeks and 5 days on November 14, 2010. They were due March 8, 2011. Mary, our stronger twin at birth, spent just two weeks with us before earning her angel wings on November 28. Claire continued to fight and came home after 103 days in the Neonatal Intensive Care Unit. 

Then, almost five years later, we welcomed our “rose from the heavenly garden,” Martha Rose, at 37 weeks. It was a stressful pregnancy with several trips to the hospital to make sure all was OK, but we made it through that chapter with thanksgiving for our beautiful girl.

Fast forward to May 2018 and we learned our family would be growing again. I was preparing myself for the pregnancy, knowing a cerclage surgery (to prevent preterm birth) would be coming soon, getting ready for the bi-weekly checks to be sure the baby was ok, and knowing I would need to put my beloved high heel shoes away sooner this time around. We made it through the pregnancy with Martha Rose and we could do it again.

What we had never thought of or planned for was a chromosomal abnormality for our sweet baby boy. In fact, we had never heard of Trisomy 18. When we learned about the extra fluid around his neck at the 12 week scan, we were told to expect a 50/50 chance of a problem, including Down Syndrome, Turners Syndrome, or a host of other less likely scenarios. So, we researched and planned for what we had anticipated would be Down Syndrome, Turners, or nothing. We had a 50/50 chance, right?

Then, on Friday morning, July 27, my incredible doctor, who has been with us since the beginning, called to share the news that the blood test had come back positive for Trisomy 18 and we were having a boy. It’s hard to put into the words the feelings that wash over your body when receiving news like this. I almost wanted to stop time, so I could allow my husband a few more moments of normalcy before dropping this news on him that Friday morning. I knew that we were starting a whole new journey way different that the journey we experienced with our premature daughters nearly 8 years ago.

We have learned a lot so far. What I think is the most difficult part of this journey is the true unknown of how long Baby William will be with us. Many of the babies diagnosed with Trisomy 18 pass away in utero, only a small percentage make it to birth, and very few make it past that time without significant medical intervention. We had planned to have an amniocentesis to confirm the results; however, the various markers on our sweet boy’s ultrasound were definitive. So, we go in every week for fetal heart checks to see if Baby William is still with us. His heartbeat continues to be strong.

His diagnosis is with me at all times…in the middle of the night, when I wake up in the morning, walking through the airport, driving to a meeting, and so many other moments throughout the day. I find myself thinking more about his funeral rather than his arrival at home. Today I spent time reading about birth plans and researching comfort care options for Trisomy 18 babies. As tears streamed down my cheeks, I thought about what we would dress him in for his funeral. I will never forget choosing what Mary would wear-her baptism dress given to us by the NICU nurses.

Yes, we have been down this road before with our sweet Mary. We held her as she took her last breaths at 2:15pm on Sunday, November 28, 2010. We worked with our wonderful local funeral home to create beautiful prayer cards for her and prepare a simple graveside service with meaningful scripture and letters we each wrote to her. She is buried with Paul’s father. We have done this before and we are strong enough to do it again.

When we traveled the NICU with Claire and Mary, we always said we were grateful for all things. We continue to have this outlook today. We truly believe good will come from this experience. Paul and I already see opportunities to support other families and expand the mission of TODAY is a Good Day, our family’s non-profit organization supporting families navigating the NICU, based upon our personal experiences over the past several months.

Most importantly, we are celebrating the time we have right now. The girls know about their baby brother and we celebrate him. The girls will give him a kiss before bed and always mention Baby William when we go around the dinner table sharing what we are grateful for in our family dinner diary. We also started a scrapbook for him highlighting our adventures over the summer, along with the beautiful notes we have received from friends and family. The girls know he will most likely be heading to heaven. We believe his sister will be standing there with open arms waiting for him when it is his time to be called.

We took the journey with Claire and Mary ‘one day at a time’ and we are taking this new experience with William ‘one day at a time.’ We will take today and be grateful.

In November 2010, we launched into the overwhelming world of the Neonatal Intensive Care Unit (NICU) when our daughters were born at just 23 weeks and 5 days. We faced daily challenges including the loss of our daughter, Mary Gladys, two weeks into our NICU journey. Our daughter, Claire, weighing only 15oz. faced an uncertain future. Suffering from grades 3 and 4 brain bleeds, anemia, and meningitis we were not sure she would survive. If Claire lived, we were not sure if she would be able to walk or talk later in life. 

In July 2015, our baby girl, Martha Rose, arrived at 37 weeks with no complications. This was a new experience to enjoy. We thought we had faced our biggest family challenges with the preterm birth of our twin daughters, the death of Mary, 103 days in the NICU, and a stressful pregnancy with Martha Rose. 

The Trisomy 18 diagnosis of our baby boy, William Richard, during the summer of 2018 created a new chapter to write in our family’s book of life. This new chapter was filled with similar feelings we felt in the NICU, along with many new emotions. We lived life “one day at a time” uncertain of the future. Based upon his prognosis, we knew William was going to earn his wings in utero or shortly after he was born. 

We planned for William’s funeral more than his birth. It was the most surreal and lonely feeling. For 21 weeks, we visited our doctor for a weekly heart check. Each week, we listened for his heartbeat to see if he was still alive. William did not pass in utero. Our sweet baby boy joined us on Monday, December 17 at 9:38am weighing 2lb. 4oz. William lived for 91 beautiful minutes before he earned his wings. He knew only love during his time with us. His sisters showered him with hugs and kisses. They read him books and sang songs to him. Our families met him and loved him so much. 

It’s hard to put into words the feeling of holding our second child as he passed away in our arms. This is a challenging road to travel. Two of our four children have died…half of our children is a very difficult realization to process.  

We wrote letters to Mary after she died and read them at her service. We were writing letters again and using our daughter’s prayer service program as a template to write yet another funeral program for our son.

Below are the letters we wrote to our sweet William. We read these letters to William at his funeral service surrounded by the love of our immediate family. We wanted to share them here as well. 

December 19, 2018

Dearest Baby William, 

Your dad and I always said if we ever had a baby boy, we would name him William Richard Sharkey. Named for your grandfathers on both sides of our family, you have been given a strong and wonderful legacy through your name. While I never knew your Grandpa Sharkey, I have heard stories over the 17 years your dad and I have known one another about his love for his family and his dedication to his faith. Your Dida is with us today and someone you got to meet on your birthday. He is one-of-a-kind in so many ways from his incredible work ethic, his willingness to do anything for anyone, his ability to fix whatever needs to be fixed, and his love for family and others. You are blessed to carry his name as your own. 

As I sit here at 4:30am on Wednesday morning looking across my hospital room at the table covered in your clothes, blankets made with love just for you, canvases filled with foot and hand prints, ornaments covered in your footprints, a candle with a soft flame flickering since Monday, and a beautiful Christmas tree from your Aunt Christine, it’s hard to believe that I will be leaving here later today not holding you in my arms but hugging a box of memories made during your short time with us on Monday and carrying a joyful yet broken heart full of memories made over the past seven months as your sisters talked about you, gave you kisses through my belly, and made memories with you through all that we were doing as a family. We remember your first time to New York City and the Bay, your first time to the movies, reading books as a family, and so much more. 

Hearing your diagnosis over the summer was a difficult one for us; however, we are a faithful family and we believe that good comes from each and every experience in our lives. You proved that right when we chose life for you so many months ago and you stayed with us long enough to cover you with our loving kisses and affection. All you knew was love as you greeted us at 9:38 on Monday morning, December 17, and went on to meet your adoring big sisters, your loving grandparents, Uncle Rooch, Oannie, and Uncle Dick. 

Your dad and I have been through our share of challenging experiences when we said goodbye to your sister, Mary, in 2010. We know she was waiting with big, open arms as you ran to her in heaven. I can just see her smiling face standing there with Great Nan and Pop, Grandpa Sharkey, Grandma & Grandpa Benedum, Bud, Uncle Jimmy, and so many others who have gone before us. As Claire said to us just a few weeks ago, “I wish William could stay with us a little longer, but now, Mary will have a sibling in heaven.” That simple statement shows the impact you have already made. 

Just like your sister’s life, your short and simple life will be remembered always. After your sister earned her wings, I always described the feeling as a small hole in my heart that is always present and never goes away. While I now have two of those small holes that will be ever-present, my heart is also filled with joy for the time I was able to hold you close, the time you were able to meet your loving sisters, and the impact I know your life will make on so many others over the years. The joy on Claire’s face when she met you for the first time is a moment I will cherish for the rest of my life. Thank you for choosing me to be your mother. 

I love you, my sweet boy. Rest well and have fun with Mary. We will see you again. 

Love, 

Mommy

xxooo

December 20, 2018

Dear Son,

 Your Mom’s letter let you know how lucky you are to be named after your grandfathers, William and Richard. 

Your grandfather, Bill, or Mr. B, as I like to call him would have spoiled you rotten. Whether it be eating too many of his handmade milkshakes, pepperoni rolls, and oat candy, or allowing you extra time on the iPad….Dida would certainly have given you whatever you want. He loves his children and grandchildren so much. He always puts the needs of others in front of his own. He can even teach someone how to change an electric receptacle through Facetime…which is no easy task. He is an incredible example of what a father and grandfather should be. 

My Dad, Richard, has the opportunity to spoil you rotten right now in heaven. Lucky him! I am sure he is hugging you, keeping you warm, and loving you as I write this letter. Watch out for Grandpa Sharkey. When it comes practicing spelling words, be ready for him to say “No, sir!” when you get a word wrong and be ready to try “again”. For now, rest in his arms and let him tell you about our Irish family history. You will be saying Ballina, Laherdan and Mount Nephan in no time. Let him teach you about sports and what it means to be a long suffering Philadelphia sports fan. Ask him about the Eagles Super Bowl win. I am sure he was cheering loudly. If he takes you swimming, make sure you stay in the shallow end as he is not an accomplished swimmer like you sister, Claire. My Dad left a great legacy of “service above self” which is lived out in your Uncle Hank, Uncle Drew and me.  

Not only were you born into a family of strong men, you were blessed to be born into a family of incredibly strong women. Your Nanan, Aud, always has the right words to say. She also knows sometimes it’s best to say nothing at all and just share a hug, smile, or knowing nod. Nanan would also have spoiled you by playing games with you for as long as you want. 

My Mom, Pat, would also have been enchanted with you as well. Mom Mom was so happy to get to hold you on Monday morning. She would have instilled in you a deep faith in God, read books with you, bought you clothes from LL Bean and let you go through her pocketbook during every visit. She would certainly get lipstick on your sweet head. You would always know Mom Mom had come to visit once you looked in the mirror. 

Your sisters, Claire and Martha Rose, are so strong. They love you so much and did not want to let you leave their arms on Monday. They have loved you and couldn’t wait to meet you since we learned you would be joining our family this summer. Your sister Mary must be so happy to have you with her. I am sure she is taking care of you now the way Claire and Martha Rose did on Monday morning. 

The strongest person in our family is your Mom, Martha. I have been lucky enough to date her for the past 17 years. She is smart, beautiful, determined, kind, and selfless. To say she is “others focused” is an understatement. Your Mom is an incredible mother and spouse. Uncle Rooch, Aunt Steen, your Mom and I used to sing a song called “Mother of the Year” and don’t you know she won an award for actually being “mother of the year”! Our family, friends, and the community at large recognize the impact she is making through Today is a Good Day. Your Mom carried you for 34 weeks and 3 days with grace, dignity, fortitude and a love for you stronger than anyone will ever know. 

Martha and I wanted the best for you sweet William. The best for you was to be born this past Monday, December 17 at 9:38 am. You gave us your best in return. We were able to see your eyes, kiss your face, and feel the love our entire family has for you. Thank you for coming into our lives. Your 91 minutes with us were so special and powerful. 

Your Mom and I were able to do skin to skin care with you. It is something we did not do with your sister, Mary. You helped to heal a wound in our hearts by having this experience with you. We were able to sing “You are my Sunshine” and “Go Lassie Go” and your sister’s were so happy to sing “Happy Birthday” to you. You were baptized into God’s family surrounded by your parents, sisters, grandparents, Oannie, Uncle Dick, and Uncle Rooch. William, you had a very busy 91 minutes here on earth.

Precious William, your greatest gift to me was the time we spent together on Monday afternoon. I was able to paint your feet and stamp your hands to make memories for our family. I will never forget the blue and green paint on your feet and the yellow and silver paint on your hands. I will certainly never forget the mold you and I made together with Nurse Liz and Dr. Julie. You helped me find humor and joy despite my incredible sadness. 

William, your life has a purpose. You have inspired many. You have inspired me. Your time with us over the past 35 weeks will never be forgotten. Your life will be channeled into the work of Today is a Good Day to help other families facing difficult prognoses during pregnancy. 

Please watch over all of our family from heaven. We certainly could use your grace, peace, and love here on earth. 

I will always love you, my son! 

Love, 

Daddy

Dear William, 

Did you know that you are my third sibling? 

When you get to meet Mary; I think she will tell you what she did in the hospital too. Mary, Rose, you and I were all born at the same hospital in Abington. 

First I thought you weren’t so cute. Then when I saw you I thought you were the cutest baby brother in the world!

Do you know how I will remember you? I have a bear with your heart beat in it from Build a Bear.

I remember trying to read the Bible book to you and reading the Santa Workshop book to you which Santa delivered to our front door.

My favorite memory of you is when I got to hold you and I didn’t want to let you go. 

I love you.

 Love, 

 Claire 

As we write this new chapter of our book of life, we have incredibly sad moments. However, we also have joyful moments. Claire summed it up best…our family “didn’t want to let you go.” Letting go was difficult for us, but we believe good has already come from this experience and will continue to present itself in different ways moving forward.

William has already made an impact. We set big goals for our family in 2019…to spend more time together creating fun memories, to ride a bike without training wheels, to write in our family gratitude journal on a daily basis, and many more. This experience brought us closer as not only husband and wife but as a family. 

She was with us for 2 weeks…our “stronger” twin, twin B who weighed 1lb. 4oz. compared to her sister who weighed only 1lb. 2oz. when they were born at just 23 weeks & 5 days. She opened her eyes first. She had the better start in life…and then she passed away in our arms at 2:15pm on Sunday, November 28, 2010, the weekend after Thanksgiving. We knew her time with us was limited. She had been very sick for the past few days.

As a parent who has lost a child, the hole in my heart never seems to heal. I can feel the small hole that was left the day our Mary Gladys passed away. We believe she earned her angel wings that day. And, while we believe she is watching over us, days still present difficult moments even seven years into this journey.

Through our lives we meet others who have traveled not only the NICU journey but also the journey of losing a child. The difficult moments, the “what ifs,” and the thoughts will always be there. The hole is always present.

The thoughts of what life would be like can hit me at the craziest times like the dinner table. Last night, I watched Claire give kisses to her baby sister, Martha Rose, during dinner. My mind imagined what life would be like with Mary standing beside Claire. I could almost see her standing there with her sisters. We know what she would look like as they were identical twins, but what would her personality be like? Would she be as outgoing and personable as Claire? Would she be a nurturer with her baby sister?

The pain also strikes like a bolt of lightning when someone asks, “How many kids do you have?” It’s a simple question and one asked by so many daily. Living through our journey, however, I know the question is not always a simple one to answer. 

When Claire came home and life moved on, people would ask us about our family and how many kids we had as most people do during conversation at work events, social gatherings, etc... When we first started our life with Claire at home, I would freely and openly go into our story with the person who was just trying to make small talk. I would share that we had identical twins and our stronger twin passed. I would overwhelm them with our journey as a way to help myself grieve and keep Mary’s short but important life relevant. Often, people would not know what to say except “I’m sorry.” As time moved on, my answer started to change. I would tell the stranger making small talk with us at the grocery store, in line for ice cream, or an event that we have a daughter. I may add that she was born extremely premature, but she was doing great. If the person asked more questions or shared a similar story, I would then share more details about our journey. While I felt as though I was saving the person from shouldering undue burdens by hearing our journey, I always felt as though I was not giving Mary the recognition she deserved as our 2nd born child. The answer to this seemingly simple yet loaded question has changed over the years. 

Today I’ve found my answer…“We have two girls at home and one keeping watch from above.” 

With each of the answers above, I most often hear “I’m sorry” in return, which is completely understandable. “I’m sorry” is an answer that makes sense when you talk about a loss. It is almost expected, an obvious answer. However, for those unsure of what to say to me when I share our journey, you don’t have to say “I’m sorry.” I am so grateful when you ask me questions about our sweet Mary, when you ask me how we celebrate her short but impactful life. Or when you simply say “Thank you for sharing her with me.” I love to have the opportunity to share her name and her story. 

I will tell you that we talk about her to our girls on a regular basis. I may share with you a sweet memory of a visit the cemetery to place pink roses at her gravestone on her birthday or my dear friend’s family tradition of placing a grave blanket on her gravestone at Christmas. I will talk with you about our family’s nonprofit we founded to help other families with premature babies in her memory and in her sister’s honor. She may not be here with me, but the memories of holding her, reading to her, praying for her, and celebrating her life are always fresh in my heart and mind. For you to ask me about her means so much to me. 

For those of us who have had to say goodbye to our children, to the memories never made, to the “what ifs”, and the difficult moments in each day, know that you are not alone. To my friends who have lost their children, thank you for sharing their photos on Facebook, for sharing your child’s life and your memories with me. Thank you for talking about your sweet child. I am grateful to be a part of your journey. 

What is most important to our family is having the opportunity and the space to share Mary’s journey and talk about her. The hole never gets smaller, but we continue to get stronger. 

I use the phrase “Take Today” regularly. The phrase is a reminder for me that I only have TODAY. I need to look at the day with optimism and possibility. I will Take TODAY to remember Mary, to celebrate Claire, to love Martha Rose, to be thankful for my sweet husband, and to be grateful for ALL things along this journey we’ve been given.

-Martha Sharkey

I had a high risk pregnancy due to complicating rH antibodies in my blood, so starting at 8 weeks, I had an ultrasound every two weeks to make sure Jones wasn’t becoming anemic in my tummy. Not only was there no anemia, but everything looked great. My nutrition was on point, and I could tell. I was very sick the entire time but very focused and excited. I found a local birth center and an amazing doula and attended 5 of the 6 classes with my husband before Jones’ arrival. Due to past trauma, I was terrified to give birth vaginally, but believed it to be the best choice for my son. On Friday, March 24, I was wondering if my waters had broken because of a small amount of brownish liquid that had leaked out in my sleep. My doula encouraged me to listen to my body, and by noon the message was clear: I was having intense, painful contractions that were exactly 5 minutes apart. We said goodbye to our pets and told them we’d be back soon with a baby boy.

In reality, I wouldn’t return home for 80 days. At the hospital, my contractions intensified but I never dilated past 1cm. I was dripping sweat and moaning from the pain. I used the bathtub, the TENZ unit, and received narcotic pain meds, and was suffering immensely. The hospital gave me the choice to go home because I wasn’t dilating, and come back later, and I knew that wasn’t an option. By midnight, it was obvious from the NST that something was going on with my baby because his heart rate was holding at 180, and the doctor agreed to deliver my baby via C-section, but she had another baby to deliver first. I begged for an epidural, but because I needed a spinal tap for delivery, I couldn’t have one. I had to wait over an hour. I received more narcotic pain meds to get me through. I will never forget that pain. By the time I got my spinal tap, my doula had arrived and at 3:38a

m, Jones was born. The doctor held him up to me for a quick kiss through the drape and they took him immediately, so our doula followed. My husband stayed with me, already knowing something was wrong, but not letting me see, because I was so happy. After I was stitched up, I realized something was wrong because my baby was still elsewhere. My doula told us they were trying to help him, and panic set in. By 9 am, a new doctor told us our baby was dying and that we needed to get to his bedside right away. We entered a different room that was completely full of doctors and nurses working on Jones. Someone asked if we wanted a priest or rabbi. I was in a wheelchair from the C-section but I got to my feet and held my son’s hand and told him we trusted him- if he needed to leave, he could. We told him we loved him and that he had already made us happier than we had ever known. Within a few minutes, I remember hearing someone say that Jones was stabilizing, that our presence was helping save him, and we held his hand tighter. The LifeFlight helicopter was on the way, and the doctors worked to keep him stable. They could only tell us that every system in his body had been oxygen-deprived and damaged, and the way to prevent a further inflammatory response was to cool Jones’ body temp down to 92 degrees Fahrenheit. My baby was placed in a cooling tank and we never left his side while we waited for the helicopter. When they arrived, it took two more hours to safely transfer him from one incubator to another used for travel, and I watched as they lifted off and headed for Denver. The doctor offered to sign me out of the hospital then and there, so we could drive to Denver, but I knew I needed one night in the hospital after my C-section, so on Sunday morning we left for Childrens Hospital Colorado. No one could tell us what happened, other than the obvious meconium poisoning.

Over the next month, we lived in the hospital with him, each morning bringing crippling anxiety as we approached his room, because we were hoping he was still there. There was still no diagnosis, and the doctors at Children’s ran more tests on Jones than they had in their career. His pulmonary hypertension was the worst they’d ever seen. He wasn’t able to eat. He was in liver failure. We were interviewed by expert teams ranging from genetics to infectious diseases. Nothing came of any of it. Over the next several weeks, Jones made huge steps both forward and backward, and we were asked on two more occasions to return to his bedside to say goodbye, but he kept pulling through. We were able to stay at the local Ronald McDonald Charity house instead of the hospital, which was right down the road and helped our mental health. Our friends and family started a GoFund Me for us, because my husband lost his job while we were in the hospital. Once he was able to consume some breast milk, he started to improve. Jones shed all forms of his life support and after 80 days in the NICU, we are finally home with our baby. I am still grieving the loss of the beginning that I tried to give my son. I felt unseen, after doing everything in my power to ensure a positive outcome, and finding myself in the midst of terror and chaos. I held my son down during painful moments, because it was better than a stranger. I need time to recover from this trauma, but my son is an absolute miracle, beating near impossible odds, and that is the big picture that matters. Having a new baby is hard, and having a medically complicated new baby is really hard. My baby can’t breastfeed, as he was intubated for the first 2 months of his life, so instead I have to pump around the clock and feed him through a tube in his tummy. He has no microbiome from antibiotics. He can’t turn his head one direction from where he was hooked up to the ECMO. We have four therapy appointments a week and countless follow ups. But we’re all still here and I have to focus on the reasons to be so grateful. I appreciate this chance to honor myself and my son for all we have been through. – Josey Geller

ALLYSON FELIX

Allyson Felix is an Olympic athlete who has a total of 10 Olympic medals—six gold, three silver, one bronze—the most any woman has ever won in track and field. Her daughter Camryn, born Nov 28, 2019 at only 32 weeks when the athlete had to have an emergency C-section because of severe pre-eclampsia. “[The NICU] was my entire world,” she wrote on social media shortly after her daughter’s birth. “Staying in the NICU all day & night watching my baby girl fight. I can still hear the beeping and alarms of the machines. The uncertainty. The fear.” Felix’s traumatic labor and delivery in 2018 led her to become involved in Better Starts For All, a maternal health program launched by the March of Dimes. The program offers on-the-ground clinical care and virtual interventions to bring maternal health care to underserved communities. To learn more about the mission of Better Starts For All, visit betterstartsforall.com.

ELANA MEYERS TAYLOR

Elana Meyers Taylor is a three-time Olympic medalist and two-time women's bobsled world champion who welcomed her son Nico in 2020. Meyers Taylor, who took the entire 2019-20 season off, was in labor for two days and induced three weeks early, before undergoing an emergency C-section. On February 22, 2020, the day her son Nico was born, doctors told the Taylors they suspected he had Down Syndrome. Two days later, the news was confirmed and Nico spent 8 days in the NICU. Nico also had profound bilateral sensorineural hearing loss and wears hearing aids. “From the moment we laid eyes on him, of course we fell in love with him,” she said. “It didn’t even matter what diagnosis he had.”

WAYDE VAN NIEKERK

Wayde van Niekerk is now a world record-holder, global sprint sensation and home-grown hero. But before all of that, he was a tiny baby fighting for his life in the NICU. van Niekerk was born on 15 July 1992, in Cape Town, South Africa. He was born at just 29 weeks gestation at just over 2lbs, had jaundice, needed a blood transfusion and was fighting an infection. His mother Odessa Swartz recalls, “The first 24 hours after he was born were touch-and-go. There was no warning that he might come early. Everything just went the wrong way. I was young; I was terrified. I thought I’d have more time to prepare for this.” Doctors told Odessa they were sure he would die within a day or two of being born, and that if he survived, he would most likely be disabled. “They warned me he might be blind, or deaf – but they also said there was a chance there would be nothing wrong.” And that ‘one chance’ gave her hope and the drive to keep going – one day at a time. “Each and every day I had my child with me was a gift,” says Odessa. “It’s a privilege for me now, after everything we have been through, that I can say: This is my son, this is someone I look up to and admire. This is my hero.”

WILMA RUDOLPH

At the 1960 Rome Olympics, Wilma Rudolph was quickly dubbed “the fastest woman in the world,” and became the first American woman to win three golds in one Olympics. But before she was an Olympic star, Wilma was a preemie, born June 23, 1940 at just 4 lbs 8oz. At the time, there wasn’t much help for premature babies as the medical world knew very little. Because she didn’t get the solid start that preemies nowadays get, she spent many of her younger years in bed, battling Polio & Scarlet Fever that caused her to lose use of her left leg. More than anything, it was her mom’s positive thinking that fueled her. Her mother would drive 90 miles in the segregated south to find a doctor that would treat her. Even then, she recounts in her autobiography, “My doctor told me I would never walk again. My mother told me I would. I believed my mother.”

Liam is the caboose in our family. We felt after waiting awhile due to two of his brothers having Autism that it was time to finish our family. We were excited to add one more to our family and it was going easily until I found out that I had Gestational Diabetes. I really worked hard to keep it under control and even lost quite a bit a weight while being pregnant. I was doing well so I thought it was okay for me to go on our traditional big summer vacation and I had the approval of my doctor and midwife. I was 30 weeks and our family went from Idaho to New York City. The next day after traveling by plane my legs were swollen and I worried about blood clots. They seemed to get better at times so I chalked it up to being due to the hot weather of July and travel. It never fully went away but it thought it was just due to traveling and the hot weather while being pregnant. We went down to Pennsylvania after spending some day in New York City.

I started getting really sick while in Philadelphia. I was sick to my stomach and I had horrible pains in the upper right side of my abdomen. I remembered having water retention in my legs when I was pregnant with my first son which was mild Preeclampsia. I tried to find a blood pressure machine to check if I had high blood pressure but couldn't find one. I continued feeling so sick that I decided I needed to go to the ER. I went to Thomas Jefferson Hospital ER and soon found out that I had severe Preeclampsia. The doctor told me that I was not allowed to leave the hospital until I got my blood pressure down and that I would be put on magnesium to prevent any seizures. My blood pressure refused to go down with medication, so they decided to take Liam out by emergency C-Section at 31 weeks 3 days. I was so scared and wished I could be home. The C-Section went well but it was hard not having family or friends around. I needed a blood transfusion and Liam needed oxygen quickly after birth due to his immature lungs. Liam was 3 lbs. 8.6 oz. at birth. Long story short he had to stay at hospital in Philadelphia for about a month and then was life flighted back to Idaho where he stayed for about another month. He has had no major health problems since leaving the hospital. He turned one year old on July 24th of this year and is working on crawling, sitting for long periods, and eating regular food. He has some delays but I'm so proud of what he has done with the hard start he had. I'm so grateful for the hospitals, Ronald McDonald houses, and social workers that took care of him and I. I say social workers because we had a social worker that helped us get back home. I was told by our life flight crew that it was the farthest trip they have ever done.” – Alicia Campbell

Here are 5 common questions that your young one may ask while your family navigates through the NICU: 1. Did I cause my brother or sister to be born sick/early? Why did this happen? When seeing the baby in the NICU, your child could feel guilty that they might have said or done something to put the baby in there, especially if they were not excited about a new baby joining the family. Knowing that it is not their fault is more important than knowing the medical reasoning behind why the child is in the NICU.

What to say: “This is not anyone’s fault, especially yours. Sometimes babies come out early/get sick. Mommy/Daddy and the doctors will do everything we can to make sure your sibling is growing happy and healthy.” 2. Are you mad at me? Did I make you sad? Young children tend to think that they are the source of why the parents are upset. They have a hard time grasping and understanding that they are not the main cause of what is happening. The child needs to be reassured that they are not the cause of their parents’ emotions. What to say: “Mommy/Daddy are not upset or angry with you. It’s sad for mommy/daddy to see your baby brother/sister in the hospital instead of being at home. Some days will be harder than others, but we will always love you and the baby. And don’t worry, we won’t be sad forever, these feelings are temporary.” 3. Will I get sick like my baby brother/sister? In the world we live in today hearing the phrase “will I catch what that person has?” is very common, especially with kids of school-age. Reassuring kids that it is important to be aware of germs and other viruses, but the baby’s illness is not contagious and cannot be passed on to other people.  What to say: “Baby brother/sister is in the hospital because that is where he/she is going to grow to be strong and healthy, but it is not the type of germs that you or I can catch from them. We still need to wash our hands beware of germs, but you do not need to worry about getting sick like the baby.” 4. Is the baby in pain? Does it hurt to be hooked up to those machines? When kids go to the doctors or hospital, they are usually sick or in pain, so this is a common question for little one’s with siblings in the NICU to ask. In addition, all the wires and the noises can be very intimidating. It can be hard explaining why the baby is in the hospital and not home. Parents need to acknowledge the child’s fear but let them know that the doctors and nurses are there to help the baby grow and be healthy. What to say: “Everything that the doctors and nurses are doing is to help the baby. All the tubes help give the baby food and air. It will help them grow and be strong so mommy/daddy can bring the baby home.” 5. What will happen to me when the baby comes home? With any sibling, having a new baby brother/sister can make the sibling feel that mommy and daddy are not going to take care of them any longer. Reassuring the child that they will always be taken care of and that even if baby brother/sister may need more help sometimes, it does not mean that they are loved any less. What to say: “New babies always need extra help in the beginning. When you were a baby, Mommy and Daddy took care of you just as much! It will not be like this forever. Mommy and Daddy love you and the baby equally.” Having a baby in the NICU is a very intense and stressful time for a family. Kids will have questions about parents’ emotions. Reassuring the child that they are okay, their feelings are valid, and that these obstacles are temporary is a great place to start your line of communication.