If you’ve ever been pregnant, then you’ve experienced the nonstop onslaught of tests or off-handed comments or articles or books of what might be “wrong” with your child. Spina Bifida, SMA, possible miscarriage – the list goes on and on! For a type A personalities like myself, I had to stick with a weekly newsletter that only told me what was happening and what I should know about right now and my midwife, of course. That was it. There’s a lot to think about, there are many possibilities, and it’s rather overwhelming.
Mother Kristin Minara got one of those onslaught of test results back to discover the baby she was carrying had spina bifida. And just like everything she does, Kristin embraced her unborn child and embraced her new life as a mother of a child with spina bifida. As it is the end of Spina Bifida Awareness month (October), I sat down with Kristin so she and Natalie, her young daughter, could spread that awareness to us.
Before we sat down, Kristin wanted to make sure The Notable Woman audience was in the know, so she provided me with:
What Spina Bifida is:
Spina Bifida (SB) is a birth defect in which the spinal column does not close all the way, leaving a gap (like a kink in a zipper) that can expose the nerves within the spinal cord. SB is considered a neural tube defect and it happens at 28 days gestation – before women even know they are pregnant. It is the most common neural tube defect and most common permanent developmental disability in the US. Every day 8 babies are born with SB.
And also some background on Natalie’s Spina Bifida:
Natalie was born with the most severe, but also most common type, of SB – myleomeningocele (my-low-meh-nin-joe-seal). This is where the opening, or lesion, in the spine forces out the spinal cord and its protective coating, exposing it to the outside. In Utero, the amniotic fluid is quite acidic and causes irreversible damage to the spinal cord and nerves. The higher and bigger the lesion on the back, the more nerves are exposed and the more damage occurs. Natalie’s lesion starts at T12, which is located at your rib cage, and extends down to around S1, which is right above your tailbone. So in other words, her lesion was quite large.
This will give you more context for the following conversation.
Hi Kristin! Thank you for chatting with me! What is it that you do?
I have been working full time as a Research Coordinator for the Zucker Hillside Hospital of Northwell Health (formerly North Shore LIJ) for the past 9 years. I conduct diagnostic interviews and neuropsychological testing (like IQ tests) on bipolar and schizophrenic patients who are looking to participate in one of our research studies.
Of course I’m also a mom to Luke, 3 years old, and Natalie, 22 months. My husband, Chris, and I have been married 6 years this November. We live on Long Island with the kids and our dog, Baxter.
I enjoy singing and was in our local church’s choir until I gave birth to Natalie. I love to act and horseback ride but haven’t had too much time to do those things. Being a working mom to two toddlers is quite demanding as you and so many of your readers are well aware! So now free time is spent playing with the kids and taking them to the park, visiting family, or walking on the boardwalk in Long Beach.
What are Natalie’s favorite things to do right now?
Natalie, like most almost-two year olds LOVES to move and explore! This may sound typical and boring but not so for Natalie. Because Nattie’s lesion was so large and so many nerves were damaged, we were told to expect complete paralysis from her waist down. This has not stopped Natalie. She has learned to “army crawl” – crawling on her belly using her arms to pull herself forward. She also rolls around and scoots herself up and down by pulling and pushing with her arms.
Again like most toddlers, she loves to take things that don’t belong to her – like her brother’s Legos and Mr. Potato Head pieces. Natalie has a Disney Princess mirror that is her absolute favorite toy. She plays with the Cinderella joystick to make it sing and light up and she loves to smile at herself in the mirror. Nattie loves music and “sings.” She loves to play along with “Happy and You Know It” and “The Wheels on the Bus.” She still thinks peek-a-boo is hilarious. She’s a pretty chill kid and very giggly 🙂
Her favorite person in the world is her brother. There isn’t anything he can’t do that doesn’t make her squeal with joy!
When did you first learn that Natalie might have spina bifida and what was that like for you?
Like you mentioned us preggos get a whole host of tests, one of the first being the second trimester “quad screen” blood test. This blood test looks at something called the alpha fetal protein level – which is correlated with down’s syndrome (if low) and spina bifida (if high). I was 16 weeks along when I had the blood test and 17 weeks when they called me to say it was abnormal. These test have a very high rate of false positives, so I asked my OB what my results were. She said it came back in the 90th percentile. She referred me to an appointment the next day for a level two anatomy ultrasound. So we went (with Luke, our then 13 month old son).
I was scared. There is no other word. Pure utter fear. This isn’t happening. This can’t be. What the hell are we going to do? 17 weeks pregnant – the daily nausea had finally gone away and I was just starting to get into the groove and enjoying this pregnancy. We had been given a clue-in by our OB’s ultrasound tech at 10 weeks that we were having a girl, but it wasn’t confirmed. I was too early to even feel the baby moving yet. And to put it all out there, this pregnancy wasn’t supposed to happen.
We had a hard time conceiving when we wanted to start a family and after seeing specialists I was told that my hormone levels were that of a much older woman. I had poor ovarian reserve and poor egg quality. I would never get pregnant without medical intervention. Our son was conceived via IVF. We were so lucky and blessed. We had just started talking about setting up appointments with our reproductive endocrinology team to start the process over again when I found out I was pregnant. No doctors. No medications. No injections. Shocker of shockers! So how could this miracle have something wrong. Why couldn’t we have it easy just for once?
I did the only thing I could think of. I prayed. Faith had gotten us through so many hard times and I knew I needed a little divine intervention. I prayed to my dad to be with us and look out for us. I prayed to find comfort and be supported. I prayed for answers and miracles.
The next day at our ultrasound, prayers were answered in the most unexpected way….we knew our ultrasound tech! She is married to one of Chris’ firefighter friends. She asked us if we were okay having her as our tech for HIPPA reasons and I told her – you are meant to be here with us. She was such a source of relief. It wasn’t some stranger in the room with us. It wasn’t someone who didn’t talk and just stared at the screen making notes or mumbling bad things under their breath. It was a friend. I can’t tell you what that meant. In one of the scariest worst moments of my life, of our marriage, to have someone who cares for you right there. She explained everything. She started by looking at the heart. She said there was a strong heartbeat and that it was a beautiful heart. That stuck with us. That said it all right there. She went on to tell us it was in fact a girl – Natalie – we already had the name picked out. She said that she couldn’t see an opening in the spine but that she did see two things that she “didn’t like” – one was that Natalie’s spine wasn’t straight. It looked like a roller coaster on the monitor. Even untrained eyes could see it. The other was the shape of Natalie’s head. It wasn’t round. It was kind of oval shaped, like a lemon. And the part of her brain that was supposed to be developing wasn’t filling the head cavity like it should. It was pressed towards the back, like a banana.
Our friend called in the doctors to review her findings and 2 doctors came in as the “lemon-banana” sign is indicative of an open neural tube defect – spina bifida. They were sure there should be a spinal opening. Neither could find it but both doctors were positive that this little girl had SB.
What options and counseling did your doctor provide?
The doctors really didn’t say much. They suggested that I have an amniocentesis since that could confirm if there was an open lesion and scheduled me for a slot later in the afternoon. They also scheduled a fetal MRI two days later. We were sent right from the ultrasound to speak with a genetic counselor about SB. Funny thing though. I knew what spina bifida was. In college I was a genetics major and psychology minor. It was discussed – briefly – in 2 separate classes. I knew it meant Natalie had a hole in her spine. But what I didn’t know what what that meant. The counselor explained all the biology behind it and then about any disabilities in our families – there weren’t any. I was asked if I was taking prenatal vitamins before getting pregnant – as folic acid has been documented to reduce the risk of SB by upwards of 30%. Even though I wasn’t planning on getting pregnant, I was taking prenatal vitamins since I had been nursing Luke and still had some leftover. But as a new-er mom, I probably wasn’t on top of my game and taking them daily.
The counselor said that they were “doing some great things with Spina Bifida” at several hospitals across the US and she thought that Philadelphia was one of them. She looked it up and gave me the contact information for The Children’s Hospital of Philadelphia’s (CHOP) Department of Fetal Surgery.
The other option was termination. We weren’t ready to explore that yet. We wanted confirmation and information. I had the amnio. I had the MRI. Both confirmed Spina Bifida. The MRI also confirmed significant hydrocephalus (fluid compressing the brain) and Chiari II Malformation — where the lower part of the brain is pulled into the top of the spinal column. I contacted CHOP and they gave us an evaluation date 3 weeks away. And that was it.
I did what I’ve been trained to do: research. Google was horrible. Bleak, outdated, disturbing and upsetting. So I searched for blogs and Facebook instead. I found an amazing blog of a mom whose 3 year old son has SB and all the amazing things he does (Mary Evelyn over at What Do You Do, Dear?). I emailed her and she responded back immediately with words of comfort and support and understanding. I found a FB page dedicated to families being evaluated for fetal surgery and they welcomed me with dozens of pictures of happy, healthy children of all ages – some who walk, some in braces, some in wheelchairs — all of them leading full lives. I found a community of parents online who all have kids with SB and I posted to their site. I was again welcomed with love, supportive words, encouragement, and more pictures of happy kids leading slightly-adjusted but still mostly typical lives.
We felt much more positive, but still scared. We went for our eval at CHOP where they do a high level ultrasound. This time they were able to see the opening in Natalie’s back and how high it was. They did a MRI, a fetal ECHO, blood work, counseling, meetings, a full day evaluation to see if mom and baby qualify to undergo fetal surgery – where mom has a c-section and the baby’s back is exposed and repaired in utero. The outcome of the surgery is improved mobility, function and sensation. At the end of the day 2 doctors sit down and tell you EVERYTHING about this case of Spina Bifida: T12 lesion results in paralysis from the rib cage down; she has clubbed feet which shows she’s already had significant nerve damage. She has moderate hydrocephalus which could result in developmental delays and in some cases brain damage. — she’ll need a shunt to drain the fluid. The Chiari Malformation is usually asymptomatic but in some cases can affect breathing and lead to intubation/tracheostomies, or even death. We didn’t qualify for the surgery. They presented two options – post-natal surgery (back closure and shunt placement done within 24–28 hours after birth) or termination. I’d be lying if I said Chris and I didn’t consider it right then. Sitting after 8 hours of testing, exhausted, emotional, overwhelmed, listening to a bullet list of every worst case scenario regarding your child. In the chaos that was, I asked two questions — will she survive? will she know who we are? The answer was yes to both. Termination was no longer an option for us. We would go ahead with post natal surgery and prepare for a life as special needs parents.
How did you plan ahead knowing that your life was now going to be different than you planned?
All the support groups I found were instrumental in answering questions, giving us real life scenarios and expectations. The first thing they told us is that we should grieve for the life of the child we planned. Things weren’t going to be like having another baby. It was important to acknowledge the disappointment, the sadness, the loss. And then pick up and get ready!
Our first goal was to find a doctor who would treat Natalie after she was born. CHOP offered to do it but we decided that we’d prefer to be at home and go through our insurance. Fortunately working for North Shore LIJ, I am connected to Cohen’s Children’s Hospital and was put in touch with a top pediatric neurosurgeon who met with us before Natalie was born and explained the surgery, the shunt, and her hospital stay. We toured the NICU where she’d stay after birth and post surgery. I switched OBs to have one that would deliver at the women’s hospital connected to Cohen’s so Natalie could be transferred safely after birth. I was scheduled for a c-section at 38 weeks — December 15th at 9am.
Once we had a game plan, we told our family. It was really difficult to do because there were so many questions and we were just learning the answers ourselves. We did the best we could and filled in the rest as we learned it.
The rest of the pregnancy was easy and typical. I tried to “dress my bump” and bought lots of girly things for Natalie. After much debate I had a baby sprinkle for my friends and family to celebrate Natalie. It was focused around quotes I had found about strong women, among them Shakespeare’s “though she be but little, she is fierce”!
LIJ called and checked in on me. They put me in touch with another local family who had a daughter with SB the year earlier and had post-natal surgery as well. We met them in person several times and they were so helpful and warm. Their daughter was doing well, such hope. My original OB would call to make sure we were feeling okay. We had so much love and support!
We put Luke in day care so that we knew he was being taken care of while we stayed with Natalie in the NICU. We arranged to have our dog boarded.
And then we waited. There were good days and okay days and bad days. But Natalie was strong and I reveled in each bump and kick I felt because I knew it meant that maybe doctors didn’t know everything. She was meant to be here. And she was going to do things her own way. And that gave me hope. She gave me hope.
You have a young son Luke so you’ve been through childbirth and the immediate after before. How was that different with Natalie? The same?
I think I was more prepared for Natalie in a way. There was so much that was planned and expected. I accepted this was going to be a very different birth and birth plan.
With Luke, I wanted to give birth naturally (with an epidural). I made sure my OB know and promise that a c-section would only be in a medically-needed situation. I gave birth to Luke in the way I wanted but the scenario was not how I pictured. I didn’t expect for labor to extend for so long or that hospitals consider you a liability after your water breaks and keep you in bed no matter how you wanted to labor. I didn’t know that when I developed a fever lasting more than an hour meant that Luke had to go to the NICU for infection observation. I barely got to see him immediately after he was born. Chris didn’t get to hold him. There was no skin to skin or immediate latch. I cried and cried in recovery. I stayed on the maternity floor with newborns crying and being wheeled in front of me. It was quite emotional. I didn’t feel bonded to Luke for several days after I took him home from the hospital.
I knew ahead of time that I wouldn’t see Natalie. That we couldn’t hold her. That I couldn’t nurse her right away. That as soon as she was delivered she’d be whisked away by a team of doctors and nurses. I wanted a c-section for her safety and to reduce my stress during labor. What I didn’t expect was to go into labor the NIGHT BEFORE my scheduled c-section! Once again, Natalie was proving she was calling the shots. Natalie was born via c-section December 14th at 11:50pm. And she was taken away. All I wanted to know is if she was breathing. Chris told me yes and that she was beautiful.
I was better prepared to start pumping right away. It made my milk come in so much faster than with Luke that Nattie barely needed formula supplements her entire time in the NICU. When I got to see her the following morning, it was through her plexiglass incubator but I got to hold her hand until they came to take her to surgery at 12 hours old. And I felt so bonded to her. My warrior princess!
The big difference was my physical recovery from the c-section. I took the full 4 days in the hospital and made sure to ask for pain meds when I needed them. The hospital was so considerate and placed me on a floor for general and gynecological post-op. No new moms. No nurseries. No crying newborns. It was comforting and peaceful. My nurses were awesome, asking to see pics of Nattie. Making sure I had a PA on all to take me in a wheelchair to the NICU whenever I wanted. The NICU staff was amazing. Each nurse gave us a different milestone — one let us help change and bathe her for the first time, another let us feed her with the bottle, another let us hold her. The nurses cheered and pat me on the back for every ounce of “liquid gold” I provided, no matter the amount. We were allowed to decorate Nattie’s space to make it feel less hospital-like. It was the best of the not-the-best scenarios.
When bringing Natalie home, did you feel like you had the support you needed?
Yes and No. I had known in advance (from a mom of twins) that I could ask for a baby nurse upon discharge. I was glad I asked. The nurse came weekly and checked Natalie’s surgery scars. She checked her weight, her eyes, her reflexes. She checked the pressure of the fontanels and showed me how to check for the cranial pulse. These were important as poor pulse, increased pressure or bulging were signs of shunt failure. Shunts have a failure rate of 40% in the first year. We needed to know the signs.
The day before Natalie was discharged the residents showed my husband and I how to cath Natalie. This is using a catheter to draw out urine. Natalie needed this done every 4 hours around the clock as the SB affected her bladder nerves, making the body not know when to empty a full bladder and not being able to empty it fully. Without it, she could develop a severe infection and sepsis. We were shown once and practiced once each. I wish we got more help there. Again the baby nurse was crucial in showing us a quicker, easier, and one-man way to do this.
My mom helped where and when she could but since life likes to keep us on our toes, my mom was actually recovering from a massive heart attack she suffered in October. She wasn’t allowed to physically lift anything more than 5 lbs. So she was more emotional support this go around. (After Luke, she stayed with us for a week and was seriously like a house elf!)
We needed some babysitters here and there to get Natalie to her list of follow up appointments when Luke wasn’t in day care or was sick. Again we got lots of phone calls to check on us. Tons of cards and prayers for Natalie. The emotional support was amazing. Looking back, we probably could’ve asked for more help from babysitters or for meals. We don’t like asking for help, so we didn’t.
[Cristin’s note – Friends, ask for help when you need it. I would have been there in a heartbeat!!!!]
The support of Natalie’s doctors however was great. They were all in! And there were a lot of them! Neurosurgeon and plastic surgeon to close Natalie’s back and place the shunt; orthopedist to cast and correct Natalie’s club feet; urologist to monitor Natalie’s kidneys and bladder; general pediatrician for typical newborn needs; developmental pediatrician for all NICU babies. And then we were introduced to Early Intervention – a nurse, a social worker, and a physical therapist. All to get our girl stronger! Quite the team for this little lady.
How was returning to work?
So different than with Luke. I looked forward to going back to work after Luke. I was allowed 6 weeks and extended it 2. After the 8 weeks I went back full time. When Luke was around 4 months old, I cut my hours back to 4 days a week. It was great to be with adults, using my brain, and having conversations that used more vocabulary than baby babble and singing Twinkle Twinkle Little Star!
With Natalie, almost my entire maternity leave (given 8, extended it an extra 2) was spent going back and forth between the NICU for the first 2 week of Natalie’s life, then doctor’s visits. When Natalie was 5 weeks old, she wound up back in the PICU for a virus that left her weak and dehydrated (unrelated to SB).
I went back to work for my 4 day week but it feels very different. I feel removed, passive while there. I spend most weeks wishing I could quit and be a stay at home mom. I want to be more involved in her care and progress. Honestly I am there because the medical benefits cannot be matched. Working for the hospital system where your special needs kid’s doctors and hospital is through has its perks.
What’s the every day like raising a child with spina bifida?
The majority of the time it’s like raising any other child! The love and snuggles, the feedings, the burps, the diapers, the projectile everything! For example, Natalie’s biggest struggle right now are 3 of her 2-year molars breaking through. She hasn’t slept through the night since May. And neither have we!
Seriously though, the first year was the hardest – more because you are learning about this baby and little things can turn into big things very quickly. There are tons of doctor visits for follow ups. You wouldn’t believe what our calendar looked like! I had to color code it all to keep the appointment straight.
Now, Natalie is doing so well that we only have a few follow ups. Usually anywhere from every 4-6 months to every year. Her shunt looks great and is doing its job. There are signs her brain is expanding back into her skull as it should. She did develop crossed-eyes and is far sighted, things that may be related to the Chiari Malformation (the hindbrain is where the nerves for the eyes are). She wears the most adorable purple glasses that she loves to rip off before you even turn around.
In the minority are the extras, things that we balance and consider our new normal life. Natalie still requires cathing to empty her bladder fully but now it’s every 5-6 hours during the day only. She now has a physical therapist, an occupational therapist, and a speech therapist that come to our home every day of the week. Natalie also just started a special needs school program so she’s also receiving PT, OT, and Speech there too. She gets to socialize and learn in addition to working on her motor skills.
And again, because life likes to make things interesting, Natalie was diagnosed with a Seizure Disorder in May 2016. This is totally unrelated to SB. She takes medicine twice daily to prevent the seizures but still experiences them about once a month. This has been our new challenge and worry. We’re still trying to figure it out. Aside from the seizures, she has a significant language delay. She only says baba and dada and babbles much like a 8-10 month old. She has picked up some sign language, like more, up, all done, but has plateaued over the summer. Her therapists feel this is two fold – it’s due to the seizures and the seizure meds (which literally work by slowing down the rate at which her nerves send signals to her brain) and the fact that she is doing so well in other areas. Her physical improvement is cognitively trumping improvements in other area because of how much effort is expended. It’s very hard to not hear her call “Mama.” She can’t indicate what she wants so we have to be tuned into her and the course of the day very well. Fortunately she’s pretty easy to read and a happy girl. I think I struggle the most and get the most upset about her communication more than anything else we’ve had to deal with.
What’s Luke’s relationship like with Natalie?
Best Friends! They are a dynamic duo! He loves “his baby.” He does everything to make her laugh and smile. If she’s upset, he’ll come over to tell me what he thinks Natalie needs (a bottle, or a hug). He loves to roll on the floor with her and play. He has never asked why she doesn’t walk or talk. He goes with the flow because this is his normal life too. Luke gets excited now that Natalie crawls all over the place and laughs when she gets somewhere new. He loves when she’s in her braces and stander and he can give her hugs standing up or he can show her things (like how to stir baking ingredients or how to paint).
And it goes both ways. Natalie loves loves loves Luke. She smiles when she sees him first thing in the morning. She reaches for him, crawls over to him. She even has her own sound for him (bruh!) She squeals when he does something funny and stares at him intently if he’s talking to her or showing her something. It’s so awesome and I’m so proud of them.
How does your husband fit into all this?
Chris is everything in this! Not many marriages would be able to withstand what Chris and I have gone through.
He was such a source of emotional support for me during the pregnancy. When I was having a rough day he’d remind me that Natalie was tuned into me in a very special way and that I had to be strong for her. Somehow our bad days never overlapped and we were always able to be there for each other. He took care of Luke and Natalie after I recovered from the c-section and then when I got the flu a week later, while Nattie was still in the NICU (how fun does that sound?!).
Daily, he is the stay at home dad. He’s retired from the FDNY after a serious knee injury in 2011. So he was the one to go to 75-90% of Natalie’s doctor visits. He would be home for all of Natalie therapy appointments. Nattie is definitely Daddy’s girl! We’re all really lucky.
What will Natalie’s life be like, as far as your doctors tell you?
They don’t tell us and that’s what I love about Natalie’s doctors. From the moment she came out of surgery, she has surpassed everyone’s expectations. She wasn’t supposed to move and she was wiggling her butt just days after surgery. She now can move her right leg from her hip and her right knee. She can’t feel anything below her pelvis but sensation plays less of a part in being able to move than you’d think.
Natalie is clearly interested in doing things in her way, in her time and we’re going to roll with it.
Every child with SB is different. Some go on to need other surgeries in the future (shunt repairs, back surgery, bladder surgery, etc.) Really nobody knows until it happens, so we just have to watch Natalie and keep in touch with her doctors for anything that seems unlike her. Right now, she’s healthy. She’s happy. She’s learning to get around however she can and explore life.
What will your life be like?
That’s a good question! I haven’t a clue! Again I think the majority of the time I think it’s just being a parent and all the craziness that can bring. For Natalie, Chris and I wanted to make sure that she’s taken care of correctly if heaven-forbid anything happens to us. After Natalie was born, we set up our Will, named legal guardians and set aside legal language that any finances for Natalie are protected from things like Social Security and Medicaid if she needs them.
Day-to-day life just takes on some critical thinking. Thinking outside the box. Is this an activity Natalie will enjoy? Can she participate? Sometimes that’s hard and gets us upset (like birthday parties at bouncy houses). Sometimes it isn’t as hard (like going to the playground and putting her in the swing or taking her to a petting zoo) and then we feel happy and like a typical family. We always have cathing supplies with us so we can be out and about. We now carry emergency medicine if she has a significant seizure (like an Epi-pen).
Down the line, it will involve family vacations – where can we go that’s accessible for her? Making sure wherever we go has access to a good hospital and medical facilities in case we need them. It will probably involve moving – we live in a 1920s colonial with all bedrooms on the top floor. We think Natalie could benefit from an open floor plan with a bedroom and full bathroom on the first floor.
What are your hopes and dreams for her?
To keep proving everyone wrong! I would love for her to go to school and find something she loves to do and do it. We want her to be happy and experience life in as many ways that we can provide. I want her to try new things and to have friends. To find love. Pretty typical parent hopes for their kid!
I know Natalie has some pretty rad wheels. Do you mind telling us about them?
SURE! Nattie has some neat things to help her be mobile. The ‘rad wheels’ you are talking about is what we call a “Bumbo wheelchair.” It is literally a bumbo seat and some everyday products that have been hand-made into a mini wheel chair. Our friend Tim volunteered his time and skills to put it together for Natalie. It’s awesome. It’s hot pink! It has a glitter monogram sticker on the back. She’s getting the hang of it! There is a “real version” out there – it’s called a Zipzac. They’re quite expensive ($1500+) and aren’t covered by insurance. So unless you can find a hand-me-down, most parents opt to make the DIY version.
Natalie also has leg braces called HKAFOs (hip-knee-ankle-foot orthotics) that we use to brace her legs straight and use with a dynamic stander. That’s a metal frame with belly support that Natalie straps into in order to stand up. It also has wheels that I’m excited to say Natalie has finally MASTERED!
What sort of support do you have access to? Any organizations or non-profits?
I’ve applied for Social Security Disability for Natalie which she should receive by nature of the fact that she has a lifelong developmental condition that will not improve. However we were denied because of our salary. I haven’t been able to find anyone who knows enough about applying for SSD for a minor so I haven’t applied again.
All of Natalie’s medical needs are covered under my insurance. We just have out of pocket co-pays and a yearly deductible. My coverage is excellent and I honestly feel so blessed when I’ve seen our explanation of benefits.
Right now, we have everything else through Early Intervention. Natalie qualifies for this through Nassau County through age 3. It provides therapists in your home for any developmental disability.
She goes to a great school that’s not-for-profit. It is designed for children ages 18 months through 12 years who have special needs of any form.
My main day to day, question in the middle of the night, support continues to be the community group I found when first pregnant. I also continue to follow 2 FB groups for parents of children with SB.
We have no other outside support. There is the Spina Bifida Association with chapters all over the US but the phone numbers for Nassau and Suffolk county don’t pick up and my messages have never been returned. When I was pregnant I tried to connect to the March of Dimes but I could only find connections on how to donate or do walks – nothing for if you actually needed their help. And I have zero time to investigate it further. It’s honestly frustrating.
What would you recommend to another mother who might be in your shoes, just discovering that the child she carries has this condition?
First I want to say that this is OUR story. This was a path that we thought about, investigated, prayed over, and truly believed we could handle. Our family is one of only 38% that choose to continue the pregnancy after a diagnosis of Spina Bifida. It may not be for everyone. But I hope that reading this you could see that there’s hope, there’s joy and laughs, there’s still a family and a future.
Don’t let fear make your decision. Please get information from someplace other than your OB and Google. Doctors literally read 1 paragraph in a book about SB and go off of information from the 1960s. Look at the MOMS trial from 1995, investigate hospitals that are doing fetal surgery (CHOP, Boston Children’s Hospital, Vanderbilt, Cincinnati, San Francisco, Texas, among others). These are the leaders and the most knowledgeable about the diagnosis. Look for online community groups – other parents going through this, other people who live with this. There is no lack of hope and support out there.
This is the scariest and biggest thing for you, I know. Honor your emotions, ask for help, ask questions. Get information, get support, then take all this knowledge to make the decision that’s best for you and your family.
What’s the most important takeaway you want people to get about spina bifida?
Spina Bifida is just a footnote to Natalie’s story. This doesn’t define who she is and it’s clearly not getting in her way!
Every child with Spina Bifida is different – parents call it a snowflake disease because of how unique each case is. But these kids are incredible! I get to experience it first hand! Natalie is a joy! Love and light shine straight from her soul in every smile and laugh every day. She is an amazing miracle in more ways than one. I am so blessed that she completed our family. I believe she chose us to be her parents and am so lucky she did. She makes me happy and completes my soul.
Kids with SB grow up into awesome adults when surrounded by caring and supportive families. One of the premiere pediatric neurosurgeons has Spina Bifida. The 2016 US para-Olympic multiple medal winner, Tatyana McFadden has SB. Aaron “Wheelz” Fotheringham has SB and is an “extreme” wheelchair athlete. Yep, pretty awesome! No “disability” here!
If Natalie were to read this interview when she’s 18, what would you say to her?
Natalie, my beautiful Natalie Grace! I love you so much, more than I could ever explain. I am so proud of you.
You have more determination and motivation than I’ve ever seen before. Use that to break down walls. Find ways to do things you want to do. But also ask for help, we are strong but we all need support sometimes. It doesn’t make you weak. It makes you stronger.
You are sweet and patient. Use that to deal with people everyday. Believe that people are good, they just don’t always think. Be kind always, you never know what people are dealing with in their own life. You never know what a simple kindness or moment of patience with someone could lead to in the future. Things happen for a reason. I can account for this personally on more than one occasion.
You are a smart cookie and do things in your own time. Just make sure you use yours smarts for good, not evil. 🙂
You are fierce! Be brave. Know when to stand up for yourself. You are beautiful inside and out. Be yourself – you are amazing and the world deserves to see that. You are worth it all and more. I would never go back and change how things played out. We are so grateful that you chose us. Dad, Luke and I are always here for you. You are so loved by our family. So many people who you’ve never even met have loved you and prayed for you since before you were born. You got this. You’ve always have!
Anything else you want to add, my beautiful friend?
I want to be positive, but it isn’t always glitter and sunshine. It is tough, but for us, not for Natalie. She goes with the flow and doesn’t know/care if she takes a day a week or a month to do something that she’s “supposed to” have figured out how to do. The times it’s overwhelming for us, we have a drink, a good cry, some “why me/her/us?” then buck up and start a new day.
Thank you, Kristin! Our love to you and Natalie!
I hope you love this interview as much as I do. If you do, then SHARE it! Kristin gave us so much by giving this glimpse into her life. The least we can do is help her share her story.