World Prematurity Day

"World Prematurity Day was created on November 17, 2011, to raise awareness for the millions of children every year who are born prematurely. While technologies and medical procedures in America have increased over the years, preterm babies still carry a huge vulnerability to develop cerebral palsy, delays in development, hearing problems, and sight problems.

Additionally, while neonatal death in the United States is low in comparison to most of the world, premature births account for a quarter of all neonatal deaths.

That’s part of the many reasons why World Prematurity Day was created – to shine a light on the risk and hardships created by premature births, cost-effective and proven solutions, and spreading compassion for families who have experienced premature births."

I personally celebrate this day because I am a mother of a preemie. My oldest son was born at 33 weeks gestation.

I was Active Duty US Air Force when I went into pre-term labor at 33 weeks and 6 days with my first son. Everything during my pregnancy was going just fine, he was growing normally, there was nothing to be concerned about except for sciatica and a couple of days where I felt decreased fetal movement at 28 weeks and they attributed it to me not having enough room for my son. Little did I know that only 5 weeks later I would be giving birth to my son.

I ran into the hospital because I was feeling low back pain and pain in my right side all day long. I called my midwife and she told me to meet her at the hospital. I was already, ready to give birth and there was a hope that they could stop my labor with magnesium. The original plan was to keep me on bed rest for 4 weeks until I was 37 weeks along in the hospital to monitor me and then those plans changed when they learned that I had very low amniotic fluid and the team decided it would be better that I deliver him naturally than attempt to keep me on bed rest. During my labor, they found that they wouldn't be able to help me deliver naturally and I had to have an emergency c-section.

I got to briefly look at my son before he was whisked off to the NICU. For 10 of the most painful days of my life, he was the biggest baby in the NICU and often I couldn't hold him because they were trying to bring down his bilirium levels. He sat for several days until that blue light. I decided that that point to launch a now closed photography project. The Born Early Project. I'm not sure if I will bring the project back or not but it was a pretty amazing passion project of mine.

I decided to leave Active Duty in order to give my son the care that he needed and since these past 11 years my life has changed in ways I could never even imagine from moving careers three times to welcoming another child into the world. It's been a journey and one I wouldn't change for the world.

Sarah Marshall of TravelAble Vacations also shares her storied about how her life was changed by a child in the NICU. Listen to the podcast episode below or read the interview!

Sarah Marshall is the founder of TravelAble, a full-service travel, and disability advocacy agency with a mission to make the world accessible for families and individuals with disabilities.

In 2009, her journey was redefined by the very premature birth of her son while stationed in the Middle east. This experience, and the subsequent navigation through medical and cognitive diagnoses and challenges taught her and her family first-hand the trials and tribulations of traveling while caring for their son. From that first adventure, her family never stopped exploring the world. And after many trips where tears turned to smiles, she set out on a mission to give every family, regardless of need, a chance to experience this kind of transformation through custom-designed extraordinary vacations!

She is also a sought-after speaker on autism adventure, presenting around the country on her secrets to travel success. In 2020, she will be presenting in Los Angeles, Chicago, and Phoenix at the Abilities Expo, a national disability resource expo. She also gives pro bono presentations to societies, therapy centers, parent universities, and other community gatherings, and has a partnership with the ALS Association of WI, IL, and the Autism Hero Project.

She currently holds specialization as a Certified Autism Travel Professional (IBCCES) and Certified Accessible Travel Advocate (SNG). She is also a proud member of the American Society of Travel Agents (ASTA) and the Family Travel Association (FTA). She holds numerous certifications in disability-friendly destinations and cruise lines. To learn more and book a complimentary call, visit her website at www.travelablevacations.com.

I know from following you on IG you talked a little bit about your experience with having a baby in a NICU overseas, Were you traveling when this happened or was it planned?  What gestation was Aidan born at?  Can you please describe the circumstances of that and detail your experience in the NICU?  

So yeah, my husband is with the Foreign Service and we were stationed at the American Embassy in Amman, Jordan.  Amman was a wonderful place for families, so we decided to start ours while there.  I got pregnant pretty easily, but about 18-20 weeks, things started to go downhill fast.  I went into the hospital twice, once at 24 weeks, and then once at 25 weeks, and the plan was to send me back to the US, but I got too sick too quickly, so a decision had to be made.  In the middle of the night, I was shuttled in an ambulance across the border to Israel, where Aidan was born at 25+5 weeks (we always just say 26). 

I want to say that the NICU was a joyous experience, but I was fighting a lot at that time.  First, I was fighting my own mental health battle, having gotten pretty severe PTSD about the whole thing.  I was fighting with my family, who was grieving back in the states and had no other way to get a hold of me except blog posts.  And I was fighting with a new culture.  Here's what I mean by that...

The hospital I was at in Jerusalem was the only hospital in the city that would have both Palestinian and Israeli patients.  As such, it was very "soviet" in style.  Rather than your meal being brought to you in bed, a large Russian nurse would come to get you and walk you down to the end of the hall (with your IV) to get food from the cafeteria.  The visiting hours for the NICU were very short, and when I would call after hours to get an update, no one would speak English with me.  So I had to have the nurse from the Embassy call every night and then translate for me.  When I asked the head nurse if she could please assign an English-speaking nurse to Aidan's care sometimes, she yelled at me and said I wasn't trying hard enough for my child.  Let's just say lots of crazy things happened and lots of tears were shed.  

What happened to Aiden after you were discharged from the NICU?  How did things beyond having a baby change your lives I.e. his special needs.   When we were discharged from Jerusalem, they flew us back with Aidan in an incubator to Washington, DC, where he was admitted to a step-down unit in Fairfax, VA.  When he finally came home a month later, it was a crazy shift in our schedule.  He didn't sleep like a "normal" baby, and since he had bad lungs, he would sometimes forget to breathe in the middle of the night, which would set his oxygen alarms off.  My husband had to take a night shift job, and so most mornings he was sleeping and I had to be up with the baby.  It was exhausting.  We had multiple doctor's visits per week, and in the months after Aidan was officially discharged, he was re-admitted 4 times to the hospital for failure to thrive and other issues.  We went from living this care-free life where we could go anywhere we wanted, to being homebound.  No one could come over, we couldn't go out.  In the winter, we had to worry about RSV and other crazy young child diseases that could have killed him.  We missed my sister-in-law's wedding; we alienated family members by refusing to go to Thanksgiving dinners and holiday parties.  It was almost like this time with COVID, we just couldn't chance to be out.  For roamers like ourselves, this was a death sentence if you will.  We needed to get out and we couldn't. How has your experience in the NICU shaped how you travel the world? Do you advocate more than ever for your clients to get travel insurance? Well for one, I do a LOT more detail planning than I used to.  Every time we flew, we carried multiple letters from doctors explaining why a 6-year old child still had to travel with formula, why they weren't allowed to open his liquid medications.  We learned where to get medical supplies from when something breaks and you are far away from your stock! I once forgot the plug to Aidan's feeding tube machine in the middle of nowhere and we had to drive an hour to pick one up from the local medical supply place.  Yes, I advocate for travel insurance.  My clients must have it or they have to sign a waiver.  We talk a lot about packing lists and making sure you have everything -- as well as finding those resources in case something breaks or needs to be replaced.  I also try and find resources in English around the world so that they can call and get medical care, advice, etc., in their native language.  What would you tell a client about traveling with a baby/child with a feeding tube? Are there any limitations to this?  What was your main struggle? I would tell a client that it is very easy to travel with a feeding tube.  The issue is the food that goes inside!  You have to have at least 2 feedings when going through airport security so that they can open one to test it, and then you can use that one right away.  I also advise my clients to ask their medical providers to advance them 1 month of formula (if that's what they use) and have it shipped to the hotel to arrive one day after the client arrives.  This way, they know the powder is intact and not spilled all over the inside of their suitcase or confiscated by customs. What tips would you give to someone with a baby in the NICU?   Stay strong and fight for that baby!  Aidan fought and I fought with him every day -- in fact, he came out of the womb punching! I credit this stamina to his survival and beating the odds.  I would also say, it is important to take time for yourself.  In America, the NICU expected you to be there every moment of every day.  In fact, they yelled at us when we didn't show up when we said we would.  But in Israel, the NICU closed at 10 pm and reopened at 12pm and you were not able to stay overnight.  It was actually refreshing to go home and get a good night's sleep, wake up rested, have a nice breakfast, and then go over to the NICU.  Make sure you are keeping yourself healthy so that your baby has the best chance. I know that Aiden has autism what does travel look like for you now compared to when he was using a feeding tube? Well, Aidan has had autism and the feeding tube!  While he wasn't diagnosed with autism until recently, he has had the same challenges as an autistic child since the beginning.  Feeding is always a big issue because if the texture of food or the sensation of food hits him funny, he will vomit.  I can't tell you the number of restaurants he has thrown up across the globe.    There are times that he refuses to get off the airplane because of the noise.  Once, when he was 6, I flew back with him from London all by myself.  I had to carry his car seat, all of our bags, and he refused to get off the airplane.  Fortunately, a nice woman saw me struggling and took his hand as he screamed.  The feeding tube was the least of my problems! But really, we plan ahead a lot.  We check and double-check everything.  We call ahead to make arrangements.  It's become normal now. What tips do you have for someone that wants to travel with a preemie?  I ask this because it took me until Thane was 10 months old before I felt comfortable about traveling with him due to Whooping Cough etc.   I would say wait until the doctor gives the okay. Aidan had junky lungs until he was about 3 and was on oxygen.  When he was 1, we finally got the okay to get on a plane.  It wasn't until he was 5 that we were able to get the okay to go back overseas.  And that's okay!  Take it one day at a time and keep your doctors in the loop.  They will let you know when it is safe to travel again.   And then when it is safe, try not to talk yourself out of it!  Traveling can be great for children with needs because it gets their minds working, helps them develop independence, and can often lead to huge developmental milestones.

Quick-fire Questions - What is one tip you'd give to anyone thinking about traveling with a loved one with special needs? -- use a certified special needs travel planner, trust me, we understand. What is your favorite destination that you've traveled to? -- Scotland, hands down.  If I could retire there, I would. What has been your least favorite destination? -- Paraguay.  I went to Asuncion for 2 weeks for work, and it was a beautiful country, but not much in the way of services. What is one travel program you'd recommend anyone with a disability use? -- Google Maps now has walking directions that are accessible in certain cities.  Never leave home without it. What is the length of travel you'd recommend for someone with autism?  I.e. how many days do you think is good to experience a destination?  -- That's going to depend on the kiddo.  But usually, I recommend 1/2 day of rest time for every 1 day of "doing things" time.  So if you are go-go for 2 days, then 1-day rest, for a 3-day vacay.  If you are go-go for 4 days, then 2 days rest, etc.