Friday, October 18, 2013

Milo's Story

Last week, the following remarkable Facebook status flashed across my feed:
“I just learned that 64 percent of babies with spina bifida are selectively aborted after being diagnosed. That number is heartbreaking and we need to change that. Yes Milo has spina bifida, yes Milo (and all of us) have some really really hard days. But Milo is happy, Milo is thriving and best of all Milo is doing almost everything the doctors told us he wouldn't. Yes he has to work a lot harder, but he does it all with a smile and his strength and courage is an inspiration. October is spina bifida awareness month- if you have any questions about spina bifida or Milo's story, please just ask we are always happy to share and brag about our rock star.” --Tova Berger Nicholson

Tova and I grew up in the same Jewish community on Long Island. We have not kept in close contact, so I hadn't known that her son had spina bifida. I was struck by the honesty, sincerity, and joy in her post. Since I know very little spina bifida, I took Tova up on her offer to share Milo's story. I wanted to hear about the challenges and realities of raising her son, and I wanted to help her get the word out about the condition. But mostly, I wanted to hear more of her exuberance about parenting Milo. Below are Tova's answers to my questions.

How and when did you find out that Milo has spina bifida?

When I was 16 weeks pregnant I went in for the routine quad screening blood tests. A few days later I got a call from my doctor telling me the results were concerning: a 1 in 4 chance of a neural tube defect. We got the call on a Friday afternoon and there was literally nothing we could do--it was awful. We had to wait until Monday morning to go in for a level 2 (very detailed) ultrasound. We found out that morning, via ultrasound, that my blood results were not a false positive. Our little baby did in fact have a neural tube defect, spina bifida. It was a day we will never forget.

What was your reaction? Your husband’s? Your family’s?

The flood of emotions is hard to describe. In the moment we found out I was completely heartbroken and guilty. I can remember, very vividly, the doctor who gave us the results telling me over and over again that this wasn’t my fault. But as a mother, its hard to hear your baby is ‘broken’; how could I not be to blame? Alex, my husband, is always extremely optimistic, and in that moment his world shattered. Why us? Why our baby? We knew so many other people pregnant at the same time- why was this happening to our baby? The emotions changed over the course of the pregnancy (and they are still changing). I became really angry at points. I learned from some other families who we met through spina bifida connections, that you have to go through a grieving process to arrive at acceptance of the situation. It’s a weird thought to have to grieve, but it's true. You have to grieve over the idea of a ‘perfectly healthy’ baby and come to terms with spina bifida. Alex and I went through it together--when I had a down day, he picked me up, and vice versa. We never allowed both of us to be down at the same time. We spent the first week after the diagnosis in our apartment, watching movies and crying a lot. After that week we picked ourselves up and decided we needed to do whatever we could for our little baby, and that really helped get us through. We still have our down days, but they are so rare that when we have them, we allow ourselves to have a good cry and then move on.
I think our families all put on a brave face at the time. No one wants to hear something is wrong with a family member, especially an unborn baby. But they all stood strong and gave us the support we needed. They cried with us when we needed them to, but more importantly they picked us up when we needed it most. They reminded us over and over again that this little baby was ours and we would ALL get through this together. They are still a very integral part of our support system and a major reason why Milo is doing so amazingly.

What is spina bifida? What are Milo’s symptoms?

Spina bifida is a neural tube defect. Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception, when most people don’t even know they are pregnant yet. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord.

There are various forms of spina bifida ranging in severity. Myelomeningocele is the most severe form, but also the most common. In this form, the baby's spinal canal remains open causing nerves to be exposed. When a baby is diagnosed with myelomeningocele, surgery is performed usually within 24 hours after birth to close the back. Hydrocephalus (an excess of cerebrospinal fluid on the brain) is unfortunately something that goes hand in hand with spina bifida; I think about 80% of children born with spina bifida will also need a shunt to control the hydrocephalus. A shunt is placed in the brain to help drain the excess fluid, usually into the stomach.
Milo was born with myelomeningocele and does require a shunt. He was born, via c-section, three weeks early because the hydrocephalus was increasing faster than the doctors liked. Milo had his back closure surgery 24 hours after birth as well as his vp shunt placed. It was really, really hard--Milo was born in the morning, and I didn’t even get to see him until that night. As soon as he was delivered they had to take him to the NICU to protect his open back and monitor him.  Alex and my parents were able to meet him, but I had to wait since I was recovering from surgery. It was the longest 12 hours. We couldn’t hold him until he was three days old. 

But, from the beginning Milo shocked everyone. He was released after only one week; two major surgeries and he bounced right back. When Milo was eight weeks old his shunt malfunctioned and we ended up back in the hospital to get it replaced, so another surgery. But again, he literally came out of surgery as Milo 2.0.  

The opening on the spine causes nerve damage; which nerves are damaged depends on where the opening is on the spine. The lower on the spine, the better for walking, but more issues arise with bowel and bladder. Milo does have a few issues in that area, but we will keep that private for his sake. Milo's ankles are pretty weak, so he uses little ankle orthotics to help him walk, although he can walk without them as well, which is amazing. The hardest thing about spina bifida is not only is it a wait-and-see game, but each case is literally so unique. We know several other people with the same level opening as Milo, and they each function so differently.

Think back to the time when you first found out that Milo had spina bifida. How does life as Milo’s mother compare to what you imagined it would be?

When you first find out your child has some sort of disorder, your mind runs crazy. When you have doctors telling you the absolute worst outcomes, it's really hard to think about life being normal. We were told our son would be a vegetable, have a low IQ, not be able to walk, wouldn’t be able to go to the bathroom, and would be in and out of hospitals and doctors' offices. We were ready to accept whatever we were handed, but, my god, life is completely different to what the doctors told us. Milo is incredibly smart--no one can get over his vocabulary and social skills--he may be behind in some physical aspects, but he more than makes up for that in cognitive development. 

Don’t get me wrong, it's not a walk in the park: no parent of a child with spina bifida will say it's easy. We have a different normal and while the first year of Milo’s life was hard and took a lot physically and mentally, it was our learning curve and we now are in our groove and we make it all work. I wish, when I was pregnant, we could have had a glimpse into our life now--we would have been able to enjoy the pregnancy so much more!

What is the most surprising thing about parenting Milo?

Milo has taught us so much. I never realized how much it's possible to learn from someone at such a young age. He has taught us to stop and slow down and really appreciate every little thing. When Milo wiggles a toe, that’s a huge deal--we celebrate that and I remember the first time I saw him do it--it's something so many people take for granted. But he has taught us to never take for granted even the smallest thing. Alex and I had a pretty strong relationship before we got pregnant with Milo, but through pregnancy and these last 2+ years he has made us such a strong force; very little can get in our way.

What is the hardest thing?

It has gotten easier, but it's hard to see what other children Milo’s age, and younger, are able to do, and without any thought. In the playground they are running, jumping, going up and down the steps alone. When we go to the playground, Milo can do it all, he just needs his mama or daddy right there to help him. It doesn’t bother him, which makes it a bit easier for us, but it does still break my heart a bit. Milo knows a different normal than we do and it's hard to remember that. We do try to make sure he doesn’t feel different--we want to make sure he knows he is like everyone else. Instead of needing glasses to see or hearing aids to help hear, Milo needs braces to help walk, and that’s ok. And we want to make sure he always knows that.

What is the best thing?

The best thing is seeing how happy Milo is. Milo has worked so hard to get to where he is today--he started walking at 25 months and he hasn’t looked back. He is so proud of himself with every thing he has achieved with his own hard work. There is nothing more heart-warming than seeing your child achieve something they have been working so long and hard on, but then seeing how proud he is of himself is just the best. Milo has the most amazing attitude and literally just goes with the flow and it really has helped him overcome so much. His happiness is everything to us and when we do have that rare down day, seeing him happy really helps put things into perspective.

What else would you like people to know about your child, your family, or this condition?

Milo is a normal 28 month old. He is doing everything a two-year-old is supposed to do: he goes to a two’s program, he loves to color, play with trucks, and yes, he has his tantrums. Milo has spina bifida; he always will. But it's just a part of who he is, it is not WHO he is. We are always happy to talk about it, but we don’t make it the first thing people know, as we don’t want him treated differently from anyone else. People have said, how great he looks and you would never know anything was wrong. And I know they mean well, and who knows, I might have said something similar to other families as well, before we were in our situation. But the truth is, there is nothing wrong with Milo. People hear a diagnosis and they shudder and apologize. There is nothing to apologize for. If you have met and know Milo, you know that he is more than OK. I keep going back to it, but his happiness is everything. Yes, we will have bumps down the road, but his attitude will help overcome those bumps.
Milo is a normal 28 month old. He is doing everything a two-year-old is supposed to do: he goes to a two’s program, he loves to color, play with trucks, and yes, he has his tantrums. Milo has spina bifida; he always will. But it's just a part of who he is, it is not WHO he is.
One other thing: if you are ever in the unfortunate situation of receiving a diagnosis for your child, no matter what it is, do your research. Doctors are the experts on some things, but not everything. Find families who are dealing with it every day and talk to them; they will know best and tell it like it is. If we had listened to what the doctors told us, who knows where we would be today, and the thought honestly makes me sick. There are always families out there that would love to share their stories and help others.

What resources (websites, organizations) have helped you the most?

While I was pregnant I found a spina bifida kids group on babycenter. Those families saved us during our pregnancy. Hearing their stories and seeing their children really helped keep our spirits up. In the last year I joined a few groups on Facebook, and it's really amazing what a tight-knit community it is. It's really refreshing to be part of community where everyone "gets it". It's a place where people come to share and brag when their child gets up on all fours, or sits unassisted, or takes their first step, and everyone is excited, as we all know that feeling.

What do you do professionally?

I am a stay-at-home mom. It’s so cliche, but so true: being a stay at home mom is the hardest job I have ever had, but by far the most rewarding.


  1. Tova, Alexis and Milo,
    Nothing that I have ever read has both touched me and thrilled me at the same time.
    Your interview was painfully honest, yet so inspirational.
    Being part of your extended family and a small part of Milo's health team, has helped me to "open up" and walk through doors I hadn't walked through before.....Yes, it is true, Milo has inspired us to be better, be stronger, be hopeful, and most of all, be thankful for all the lessons we continue to learn. Love you all very much!

  2. "Find families who are dealing with it every day and talk to them; they will know best and tell it like it is."

    I miss one perspective here: that of people who have that disability themselves. Even if those people are fine living with the challenges they have, I wouldn't be surprised if they would not want the same for their child.
    Abortion is not only about what the parents aren't willing to live with, it's also what they don't want their child to live with; for it's the child that needs to deal with it the rest of her life.

    1. To Anonymous: I agree there should be no judgment towards any family that makes whatever decision that is best for them. It is each family's choice. But it can be harder to find people who will give you hope regarding a disabled child, than it is to find people who tell worst-case scenarios. It's good to hear both sides. Also, worth mentioning that even physically normal children can develop illnesses, psychiatric problems, and other conditions that can affect their lives in significant ways. When you have a baby, you're always rolling the dice.


Thank you for your comments!