Tiniest Baby of 2019 Beats Odds to Become Busy Toddler

Specialized teams serve as lifeline for parents of children with medically complex needs

Haven wearing helmet

Haven Greyson Smith, age 2, likes to break odds and set records. Born at just 25 weeks gestation, he earned the title of tiniest baby born at Lucile Packard Children’s Hospital Stanford in 2019, and was given the nickname Mighty Peanut. He weighed just 0.9 pounds at birth. Mom, Amanda, compared him to the size of a soda can. She likes to say that when he left the hospital’s neonatal intensive care unit (NICU) after eight months weighing just over 8 pounds he was “eight times the Haven he was when he was born.”

Doctors gave Haven a 10% chance of surviving, but survive he did. He recently celebrated his second birthday. Today, he weighs over 22 pounds. It has taken a special mom and an army of experts to bring Haven along this far—farther than many imagined.

“It hasn’t always been easy, but none of that matters. I have a thriving 2-year-old, which I didn’t always believe I’d have,” Amanda says.

After Haven’s release from the NICU in 2019, Amanda and her parents considered moving back home to Mississippi but they quickly realized Haven needed highly complex care at a level that only a few children’s hospitals in the nation could provide, including Lucile Packard Children’s Hospital Stanford, so they stayed. She credits specialized care teams for keeping Haven progressing and out of the hospital, except for a few stays.

Complex Care Clinic and CORE program provide multi-layer support 

Before Haven left the hospital in 2019, Amanda was introduced to two specialized Packard Children’s programs designed to care for children with medical complexity and their families. With several challenging conditions—bronchopulmonary dysplasia (BPD), pulmonary hypertension (PH), kidney complications, a compromised gut, and developmental delays, Haven’s needs are definitely complex.

By enrolling in the Coordinating and Optimizing Resources Effectively (CORE) program, Amanda gained a multidisciplinary care coordination team (nurse, nurse case manager, social worker, care coordinator, appointment scheduler, and parent mentor) to help her navigate the complexities of the health care system and manage Haven’s care across multiple specialties.

“As a parent mentor, I provide Amanda with support and education, helping to strengthen Amanda’s knowledge, skills, and confidence to manage all parts of Haven’s care,” says Michele Anderson, Parent Mentor for CORE.

Put simply, the CORE team makes life more manageable for Haven and Amanda. They assure smooth hospital visits and coordinate Haven’s outpatient care by clustering appointments, troubleshooting insurance issues, assisting Amanda with care team communications, and providing emotional support in challenging times.

“We are the glue that binds everyone together. We provide multiple levels of support and connect specialty team members to best serve our patients,” says Misty Mallari, Haven’s nurse case manager with CORE. 

Amanda chose David Bergman, MD in the Complex Care Clinic as her son’s pediatrician, realizing this clinic had critical expertise in providing primary care to children with special health care needs. Plus, the clinic works closely with CORE to ensure responsive, high quality care.

“Parents with medically complex children describe leaving the hospital like falling off a cliff. They go from having a big team caring for their baby around the clock to being alone at 2:00 a.m. We make sure that support is in place before they leave,” says Dr. Bergman, former Director of the Complex Care Clinic.

Amanda, a NATO Medal of Honor soldier who served in Afghanistan, likens leaving the hospital with a preemie to coming home from war and transitioning back into civilian life. It’s scary, emotional, and you feel a bit lost.

“You have a different perspective on motherhood with a young preemie because you’ve gone through the trauma of not knowing whether or not your child will survive,” Amanda says.

Haven with mother

The Complex Care Clinic and CORE program go the distance to support Amanda and Haven. Recently, they teamed up to advocate for a home health nurse through Haven’s insurance provider, and then drafted an appeal when the service was suddenly cut.

“The Complex Care Clinic is on call for parents 24/7, with a goal of giving parents access to our services within 15 minutes of reaching out. Amanda knows I’m there for her for even the smallest question,” Dr. Bergman says.

Medically complex children in these programs see an average of six specialists and subspecialists. The complex care clinic pediatricians and the CORE program serve as the first call for parents when they need guidance on a concern, help coordinating care, or are feeling overwhelmed and simply need encouragement.

“I am a single mom, so I don’t turn down help,” Amanda says. “They feel like family because they know day in and day out what is going on with Haven. I can’t imagine caring for him without the resources CORE offers, and Dr. Bergman, who cares for the whole child.”

Haven lost a third of his intestines from a strangulated hernia shortly after birth that required two lifesaving surgeries before 6 months of age, and another more recently. He requires a gastrointestinal tube, or G-tube, that delivers formula to his gut to ensure he gets adequate calories and nutrients. Haven recently received a specialized G-tube known as a GJ tube to protect him from aspirating food into his lungs, which could potentially damage his lungs permanently—something the Aerodigestive and Airway Reconstruction Center team at Packard Children’s keeps a close eye on. Amanda gets specialized feeding equipment and formula from the hospital’s Children’s Home Pharmacy.

“I’m amazed by Haven’s resiliency and how after all he has been through he’s still able to take a big bite out of the world,” Dr. Bergman says. 

Sub-specialty CRIB team supports Haven’s heart and lungs

Amanda receives support from a third specialized care team—the Cardiac and Respiratory Care for Infants with BPD (CRIB) Program. Breathing problems are common with micro-preemies and can continue after they leave the hospital. CRIB began monitoring Haven’s bronchopulmonary dysplasia (chronic lung disease) and pulmonary hypertension (high blood pressure in the lungs) as a newborn and continues to do so today.

Doctors at Packard Children’s created CRIB because of the constant need for communications between cardiology, pulmonology, and neonatology experts to care for preemies who have both lung and heart disease. The coordinated, multidisciplinary effort means convenient, seamless, and exceptional care for highly complex preemies in the hospital and through the years as they grow.

“What’s great about CRIB is that with pulmonary hypertension you need both a heart doctor and a lung doctor talking and agreeing on treatment, so you get that comprehensive look in one appointment,” Amanda says.

Lungs are the last organ to develop, so when babies are born prematurely their lungs are not fully formed. This can cause heart-lung problems, and leave kids fatigued and short of breath.

“Each lung has an array of blood vessels, shaped like a tree. When a baby is born early, this vascular tree is like a tree in winter. It’s missing all its little branches and the leaves in between,” says Rachel Hopper, MD, pediatric cardiologist and co-director of CRIB. “This puts pressure on the heart to pump more blood and can cause high blood pressure in the lungs.”

Haven’s pulmonary hypertension demands a specialized use of the drug treprostinil, a medication that is delivered 24/7 from a pump that he wears continuously to enhance blood flow in his lungs and make it easier for his heart to pump blood. Without this stress, his body is better able to grow and develop. Treprostinil tends only to be prescribed by large pediatric heart centers with a PH program, like Packard Children’s. Amanda credits the medicine for enabling Haven to come home.

“As we support Haven’s ability to grow new lung tissue and blood vessels, we are seeing his lungs improve,” says Michael Tracy, MD, pediatric pulmonologist and co-director of CRIB. “Research used to say that lungs became fully developed by age 2 or 3. Now, we are learning that lungs continue to develop even into adolescence.”

Stanford Children’s Health is part of the Pediatric Pulmonary Hypertension Network, a national group of pediatric pulmonary hypertension experts, and the BPD Collaborative, a national group of multidisciplinary teams dedicated to optimizing outcomes of infants and children with severe BPD. Participation in these organizations empowers doctors to identify trends and improve care. They hope research will eventually lead to novel treatments, like stem cell therapies that could potentially help repair damaged lungs.

“Haven is clearly a fighter, and he’s getting more fight in him as he gets older,” Dr. Tracy says.

To support his heart and lungs, Haven is hooked up to oxygen at night. A recent victory was weaning him off oxygen during the day, giving Haven one less cord to tether him.

“As a mother of a medically complex baby, you have to learn how to handle emergency situations but it sure helps to know I can reach out at any time to the CRIB team, CORE team, or the Complex Care Clinic,” Amanda says.

As Haven grows, so does his lung capacity, making it easier for oxygen to flow and creating less work for his heart. The hope is that he can eventually come off treprostinil and oxygen altogether.

“It’s rewarding to care for preemies like Haven. For many the first year can be dicey, especially with pulmonary hypertension,” Dr. Hopper says. “But we know that if we can get babies to two years of life, many will grow and thrive.”

Despite medical needs, Haven’s a busy toddler

Even with having to navigate tubes that deliver food, medicine, and oxygen, Haven’s still a typical toddler. He gets wound up and has giggling fits, enjoys throwing things, and he loves to snuggle on his mom’s lap.

“He runs, never walks,” Amanda says. “He’s constantly laughing and loving life.”

Haven laughing

In his continual quest to break odds, Haven was just the third baby in the country to get COVID-19. He had high fevers, his arms and legs turned a purply pink due to low oxygen, and he lost one-fifth of his body weight. The big fear was respiratory failure, due to his lung disease, which never came to pass.

“Thanks to his mom’s excellent care and our skilled ability to support him quickly, he fared better than expected with COVID-19,” Dr. Tracy says.

Another record Haven just might set is being the toddler with the most Facebook friends. To date, he has 30,000. Amanda tracks Haven’s progress with a daily post to inspire other families with kids who were born prematurely. 

“Someday, he’ll grow up and realize he touches so many lives,” Amanda says.

Amanda is excited for Haven’s future while staying grounded in today. She’s realistic in knowing that some of his health challenges will be life long, yet she looks forward to others going by the wayside as he grows.

“Every day my son is alive is a good day,” Amanda concludes. “He’s truly a walking Stanford miracle.”

Authors

14 Responses to “Tiniest Baby of 2019 Beats Odds to Become Busy Toddler”

  1. Kathy Caputo

    Haven is truly a beautiful miracle who gives joy, love and hope to everone who sees him. His Mom is a very special person in so many ways, and the entire family-Grandparents, Godfather and Uncle, as well as his nurses who help with Haven’s care are loving and special people also. Haven has an angelic mission here on earth and he definitely and wisely chose the right family to help him with that mission.

    Reply
  2. valerie miller

    Haven .Is Just One Sweet Little Boy……He Is After Comming A Longway In Life…I Only Know Haven And Is Mom Maybe 6 or 7 Months……And What A Beautiful Mom She Is To Her Little Haven…….Haven You Wll Do So Good In Life….Cause I Dont Think Nothing Gets In Your Way Lol….May God Always Watch Over You And Your Family……

    Reply
  3. Susan Kresovski

    I just started following Havens post about 6 months ago. Haven has been through more things then any adult could handle and with a smile on his face. I’ve never meet Haven or his mom but fell in love with them immediately. Mandi is an amazing Mother and how her family rallies around her and Haven is something you don’t see in every family. I love watching the videos Mandi’s posting and we get to see this MIRACLE TODDLER is doing amazing things. Thank you for this amazing article explaining Havens conditions and how wonderful the doctors, nurses etc are working together to keeping Haven well. Well written article.

    M

    Reply
  4. Penny L Iser

    I have been watching Haven’s progress and I can see him growing all the time , he is getting so big. He is such a sweet little boy and he is such a cutie .

    Reply
  5. Pat Kennedy

    I have followed Haven since the very beginning. Amanda calls her Facebook followers “Haven’s Angels”. We are so grateful for the miracles he has experienced through the Stanford care programs. Bless your good work!

    Reply
  6. nancy cicale

    Thank you all, God bless you for saving sweet Haven, who I have grown to love and watch home him grow.
    He is truly a fighter and a miracle. Haven will show us all what it means to fight off the dragons as Mandi calls the bumps in the roads he has faced and will still encounter. Haven will become the best leader for those who will follow him. Haven is a true shoulder just like his mom Mandi, who God has blessed her as his mom .she shows true strength and love in everything she does for Haven.. We are all their Angels and pray always for you all. God speed to you all, Nancy Cicale PS Mandi has a family that is always by her side, as Mandi always say’s “It takes a village”

    Reply
  7. Barb

    I love this article. I’ve been following Haven’s journey for a year now. It is amazing how far this little guy has come in this year. Thanks to do very many. Thank you to all for getting him here.

    Reply
  8. Ellen Zellner

    Baby Haven is a gift from Heaven. He is a fighter, a miracle baby. He is an inspiration to many families no doubt. I pray that he and his loving mom receive many blessings in the years ahead as he continues to grow. God bless Haven and his mom and all of the medical professionals who care for him.

    Reply
  9. Angie Kremer

    He is a very handsome little boy. He makes me smile every time I watch him.

    Reply
  10. mary millar

    haven is a really brave and wonderful little boy.he has been our big strong dragon slayer and beleive me tjere have been many to fight off.such an inspiration. .great little guy

    Reply
  11. Frenchie Magrowski

    Haven has become the love of my life! He has come so far in this last year! I’m proud of every accomplishment!
    I love you with all my heart Haven!

    Reply
  12. Trude walsdorf

    I love watching Haven and his a mom. He has grown so much in the past few months. He is so smart and sweet. God bless!

    Reply
  13. Joyce Moore

    Mandi I do believe you the bravest person I “know”. A lot of parent’s would have given up. I used to work at an institution that people would leave their children there because they couldn’t handle the disabilities. It is a sad situation. But you have done so well with Haven. Yes, you get help, but you on your own does great with him. I look up to you, Mandi. You are one brave lady.

    Reply
  14. Tracy L Latham

    I’m so touched by this story. Not sure how I actually found your posts, but I have been following ever since. I pray for you all daily. I look everyday for updates!
    Thank you for allowing us to be apart of this journey.
    Always in Prayer for such a beautiful angel.

    Reply

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