A Birth that Turned into a Journey: Amniotic Band Syndrome

March 28, 2012

Story sent in by Jenny…

My husband and I knew we wanted to birth at home even before we got married. So when we were blessed with our little honeymoon baby, we knew we needed to start looking for a midwife. I didn’t know anyone personally who’d had a home birth and wasn’t sure where to find a midwife. A lady at church suggested a birth center north of us and since they did home births too, we decided to check them out. We didn’t know of anyone else to see at the time.

I had my first appointment at 10 weeks. Though something about the center bothered me, I couldn’t figure out what it was. The midwives were nice and we had no complaints, so we continued to see them. Around 20 weeks I asked for a referral for a sonogram since the midwives didn’t do them routinely. My husband had been against the idea, especially since I mainly wanted to know the gender and that was all. He eventually gave in to my pestering. Part of me wishes I hadn’t bugged him so much, but I’m thankful that God used it for good in the end.

At 22 weeks, we went for our ultrasound. After the technician went over everything she said she’d send the doctor in to take a second look. The doctor spent a few minutes checking specific parts of the baby. When he was done, he told us that we were having a baby girl, but they couldn’t find her lower left leg. No one expects to hear “something’s wrong with your baby”. It took us by complete surprise. The doctor told us we could meet him in the waiting room once I changed out of my hospital gown and he’d answer any questions we had. After he left the room, I just looked at my husband as if he’d know what to do to make things all right. It took all I had to keep myself composed and not cry. My hubby said to get dressed and we’d figure things out from there.

We were directed to a small waiting area where the technician had gotten my midwife on the phone. While I was explaining the results of the sonogram, I overheard the technician telling my husband the way out. She then turned right around and left. No one came to answer our questions or give us any additional information. So we decided to leave. On the way out, the doctor who had done the sonogram happened to be in the hallway. When he saw us, he immediately avoided us and began talking to someone else. My husband was infuriated. I was still in shock and trying hard not to cry.

At our next appointment, our midwives informed us that we would have to see a perinatologist for a better ultrasound. They needed more information about what was going on to be able to keep us as clients. If there was a neurological or genetic cause for the missing limb, we’d have to find a new care provider. We still felt having our baby at home was the safest option for us, so we transferred care to my mom’s OB in order to see the perinatologist.

At the second scan, things went much better. The doctor was extremely nice and answered all our questions throughout the exam. He confirmed the fact that our daughter’s leg was missing, though he said she had a full knee joint and it looked like there was additional tissue beyond her knee. He was concerned that she seemed to have clenched fists and wouldn’t open them up. He explained that it could indicate a neurological cause behind everything, but he didn’t think that was the reason in our case. Everything else looked great – she was strong and healthy, just missing a leg.

We were able to transfer care back to our midwives. Everything seemed to be going just fine despite all the bumps in the road. We were quite relieved. When I was about 34 weeks along, I got a phone call one evening just before my husband got home from work. It was the birth center, informing us that their insurance company had decided we weren’t good candidates for a home birth. They were dropping our care.

My husband and I decided we weren’t going to jump through hoops to see another OB closer to home and still didn’t know of any other midwives we could see. So, we began to make plans for an unassisted birth. We knew there was nothing wrong with our baby that warranted hospital care and that we would both be much better off at home. That was where I was comfortable. We also didn’t want to risk our daughter becoming some sort of guinea pig once the hospital staff realised she was different. My mom and mother-in-law agreed to come to the birth to serve as extra helping hands and more experienced eyes should something come up.

Thankfully, God had other plans…at 36 weeks, I was Googling midwives in VA, hoping desperately to find someone that would take us last minute. While I had no problem doing a UC, I really wanted someone trained there since she was our first. I’d never been through labor or actually seen anyone have a baby in person (even though I regularly watched birth videos on YouTube), so I didn’t know how I’d be at all. It was a security factor for me. Anyway, I found a website by “accident” (I know God led me there) called Birth By Design. I didn’t just find a midwife 15 minutes away, she was also a Christian and a very experienced midwife at that. I sent her a message explaining our unique set of circumstances and asking for a consultation. She called me up and we made an appointment.

The moment we stepped into Peggy Franklin’s office (the basement of her home), I felt a tremendous sense of peace and comfort. God had given me a deep peace and joy about our situation long ago, but this was different. This was where we were meant to be all along. I was so relieved and overwhelmed…now if only things went well and she said yes to taking us on. We talked for probably 2 hours and she said she’d like to take a day or two to think and pray about everything. She called me a couple days later and said she’d take us. Praise the Lord!

We worked out a payment plan since it was so late in the game and my hubby and I got busy with getting our birth kit ordered. I did get a third ultrasound done at 37, just so Peggy could get an idea of how things were doing since she hadn’t been providing my care. We found out our little doll baby had a TON of hair.

We just waited after that and at 41 weeks and 2 days, I went into labor…now for the story.

It was a Sunday evening and we were at my in-laws’ house. My contractions started as a backache around 7 pm. We were playing golf on the Wii and I just started to get uncomfortable every now and then…I had to sit up real straight and tried to relax, but it didn’t help. After a while of that, I just wanted to go home. We got home about 8/8:30. On Sunday nights at the time, my husband would play an online game with his brothers, step dad, my dad, and a friend from church…it was their guy time and usually lasted 4 hours on average. I saw no reason to ask him not to play and wanted him to have fun, especially since I suspected labor.

These pains were different than anything I’d felt during my pregnancy and were regular. I decided to watch a movie, like I normally did while he played, and time the pains. I was becoming increasingly uncomfortable and didn’t get far into the movie when I stopped paying attention and just focused on timing the contractions. By 9/10 pm they were 7-10 minutes apart, some were 15, but only a few. By 11 pm, I really needed and wanted my husband to help me through them. I knew I was in labor, though it didn’t fully register I don’t think. It was all back labor too…occasionally with a contraction I’d feel my stomach tighten, but that didn’t hurt. My tailbone felt like it was being screwed into. I wanted my hubby to just rub my back. I went to our spare room that we had his computer set up in and asked how much longer he’d be…he said not too long, so I got out my exercise ball and leaned on that to wait. It was torture, but I still didn’t want to rush him. I didn’t even tell him that I was having contractions yet.

He got off the computer at about 11:30 and we made our way to bed by about midnight. Lying down made things a whole lot worse and I was miserable. I asked Aaron to rub my back, but he was exhausted and it didn’t really sink in that I needed him. I could tell he was dozing off. Around 3:00 he finally seemed to understand and realised he wasn’t going to get to sleep anytime soon if I wasn’t comfortable. He said we’d time them a bit more and if they didn’t let up, we’d call Peggy. They were 4-5 minutes apart, so we called to let her know what was up. We stayed in bed a bit longer and he called out of work at 3:30, then we got up. We called his mom and my mom around 4 to let them know I was in labor. Aaron set up the birth pool while I wandered around the house. He would help me through each contraction by rubbing my back, the dash back to what he was doing.

Around 4:30 his mom showed up. She had stopped to get us a hose for filling the pool since we hadn’t gotten the chance to yet. My mom arrived about 6:30 (she lives an hour away and had stopped to pick up breakfast food too). We hung out and I labored for a while. At about 7, mom and Barby (MIL) stepped out for a bit to get more food for the day…we had so much food when all was said and done I ended up throwing a lot of it out over the next couple weeks because we couldn’t eat it all before it went bad, but our birth team was well taken care of in the meantime. Aaron and I decided to try to take a nap since labor had let up significantly. We got about 45 minutes in before I woke up to a contraction. So we got up yet again.

I labored throughout the morning, occasionally trying to snack on something to keep up my energy but I threw everything up. At about noon/1 pm, my mom said my face was changing during contractions and it might be a good idea to have Peggy come over and check me just to see how things were going. I said ok and called her up. She was at another birth, but said that Tierney, the other midwife working with her at the time, could come over. Peggy took care of calling her and Tierney showed up around 2. She listened to the baby – everything was great – and checked me. I was dilated to 6/a stretchy 7. Yay me. 🙂 I continued to labor through the afternoon.

At about 5 pm, I decided to get in the birth pool. Aaron joined me. Peggy showed up shortly after that and asked how things were going. We talked a bit while I was in the pool. I didn’t like being in the water – I kept floating around because it was so deep and my labor had pretty much slowed to nothing at that point. The water didn’t help the pain either because it wasn’t warm enough. So around 6 we got out and dried off.

Tierney checked me again and I was at 8/a stretchy 9. After that I decided to call my friend Janelle. Barby said Janelle had been texting her practically nonstop for updates, so I thought calling her would be nice. I told her they’d just checked me and I was at 8. She was really surprised that I even called her at that point, let alone was still in a good mood and calm. I suggested she come over even though that wasn’t part of the original plan. She said she’d love to. She ended up bringing Starbucks for Barby and the midwife crew (Peggy, Tierney, and two students that were with Peggy – Kim and Leigh Ann).

Things continued on into the night. I was getting more and more tired and not feeling so chatty because I was exhausted. I wandered, labored on my birth ball, leaned on my bed…just waiting and listening to the pretty music playing in the living room. Around 10 pm Tierney wanted to check me again. I was fully dilated, with possibly a tiny bit of lip left, but it’d be gone soon enough. Things were starting to slow down again because of my lack of energy, so Tierney kind of laid things out for me. She said we either needed to get things going and get it over with or I needed to rest. Rest was out of the question because I couldn’t lie down. So I could try the breast pump for a while, take some herbs, or have my water broken since my membranes had remained intact all this time. I opted to do the pump and herbs and see how that worked first. They also had me labor on the toilet at that point because I mentioned that whenever I went to the bathroom the contractions hurt worse while sitting down.

So there I was, hooked to a breast pump on the toilet and miserable…there wasn’t much my hubby could do for my back at that point, but he sat with me. I gave up on the pump after one 15 minute session even though it was working very well (the contractions said so). It hurt my nipples way too bad…

After that, they suggested I push gently with the contractions to move the baby down. It didn’t do much of anything because my waters were in the way, but it was nice to have something to focus on. This went on for a couple hours – I’d bear down with each contraction and cling to Aaron for dear life. I was in a surreal daze.

Around 1 am, Kim (one of the students) came in asking if there was a particular reason I didn’t want my water broken because it looked like it was just holding things up at that point. I said they could go ahead and break it because there was no reason not to. Peggy let Kim break my water (her first time doing that for someone – I felt special). It was clear, so no worries. Anna had done great this whole time, no signs of distress at all…she was just hanging out and taking her time.

I pushed a couple more times after they broke my water (so much nicer!) and felt her head drop down in my pelvis. It was at this point I’m fairly certain Anna turned from posterior to anterior since my back labor disappeared and things moved so quickly after my water was broken. I told Peggy and Tierney who were in the bathroom doorway, waiting. They said I should move to the bed so Anna wasn’t born in the toilet. I waddled out of the bathroom…it was the weirdest feeling having her head right there. It felt like someone had tucked a softball inside me.

I got to our bedside (just outside the bathroom), but couldn’t climb up on it even if I wanted to since our bed is so tall. I didn’t like the idea of delivering there anyway. A contraction came as soon as it was obvious I wasn’t going anywhere…I squatted beside the bed while Kim ran to get the birthing stool and Peggy got a chux pad under me. The stool felt great and was just what I needed. I pushed a couple times, making the first noise I’d made the whole time…pretty much just grunting with the effort, but it was a bit high pitched at first (Barby and Janelle were in the living room and Barby said it sounded like a puppy had its tail stepped on). Aaron was trapped behind me, supporting me, Tierney was in front of me and I was holding her hand. She encouraged me to make low sounds and direct the effort downward into pushing instead of making the noises I had been. I looked up at this point between contractions/pushes and saw my mom holding her hands up near her face in anticipation. Janelle and Barby were clinging to each other in the doorway unsure of whether or not to come in. I got real emotional right then and remember simply saying, “Mom”. She kind of teared up at that. Another contraction hit and I did what Tierney said. Anna crowned. I tried to wait for another contraction (they were pretty much back to back at this point), but oh boy did that burn…I had to immediately push again and her head was out. One more and she was all the way out.

Tierney handed her to me and I held her close. The first thing I noticed were her fingers. They didn’t look quite normal…I knew then why it seemed she had clenched fists on the sonogram. We figured out later that she was born with Amniotic Band Syndrome, which affected her fingers and caused her (mostly) missing left leg. She did end up having an underdeveloped little lower leg and foot on there that the sonograms didn’t pick up. I was also the first one to notice later that morning while changing her that she had tiny toes on her little foot…they were the cutest things I ever saw.

After the cord stopped pulsing and Aaron cut it, someone took Anna to get weighed and measured while Kim helped me onto the bed to wait for the placenta. Aaron helped get Anna’s stats and the placenta came not too long after. We had our first nursing session while Aaron collapsed next to me on the bed, completely out of it. Anna latched perfectly and ate well from the very beginning. After she ate, Peggy sat down and decided to go over postpartum care instructions…all the while I’m doing the whole head nod/falling asleep thing and struggling with all my might not to fall asleep while she’s talking. I didn’t even have the energy to tell her I wasn’t listening…I was just too tired.

My mom later helped me to the bathroom to get my pretty mesh panties situated and pad taken care of, then Aaron, Anna and I settled into bed to sleep. Everything was beautiful and perfect…though of course, looking back I realise we could’ve made different choices here and there to have made things better, but God’s timing is always perfect. Honestly we couldn’t have handled it any better than we did knowing what we did at the time. So I’m very happy with the outcome. I didn’t tear – that had been my one fear. I did have a small skidmark, but it healed quickly.

So, the end stats – Annaliese Joy was born at 1:17 am, Tuesday, 7 July 2009. She was 7 lbs. 9 oz. and 21″ long. I was in labor for 30 hours.

Here are some pictures:

Fresh from the oven, being held by Daddy.

One day old.

Sunbathing for some slight jaundice.

And close-ups of her hands and foot. These were taken when she was just over a year old, before her surgeries. One was to separate some of her fingers and amputate her little foot so she could be fitted for a prosthesis and walk; the other to finish the work on her hands.


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46 Comments

  • Elizabeth

    March 28, 2012 at 10:10 am Reply

    What a beautiful little girl! And quite the considerate mama-I might not have been so patient during the four hour online game-lucky hubby! Congrats, Anna’s just precious!

  • Christina

    March 28, 2012 at 10:10 am Reply

    This is AMAZING!!! I have Amniotic Band Syndrome! I have learned so much from it, and have grown tremendously. I have had 22 orthopedic surgeries, but they were well worth it. Both of my hands were affected and my right foot. I have four fingers on one hand and the other I have three whole fingers and two short ones. God bless this child and her parents!!

    • donni

      April 3, 2012 at 1:54 pm Reply

      I also have amniotic band syndrome, though not to this extent. I’m missing 2 of half of my fingers on the left hand and , though i kept my right hand, my wrist lacked good blood circulation for so long that it’s very swollen all the time, i lack some feeling and it’s getting worse with age. Still,what a beautiful,beautiful little girl! i cried reading this,such a sweet story and a wonderful ending.

    • Emmanuel Quartey

      September 9, 2013 at 6:47 pm Reply

      Is it possible to have an orthopedic surgery to fix fingers? If it is possible, please direct me to where it could be done.
      Many thanks

  • Andrea JOnes

    March 28, 2012 at 11:15 am Reply

    She is absolutly beautiful!!! And she definitally does have a headful of hair!!!! Congradulations on your home birth and new addition to your family!

  • Julie

    March 28, 2012 at 11:23 am Reply

    I can’t tell you how encouraging your story is for me! We are pregnant for our 3rd baby. We were seeing a midwife until a blood test showed I had developed an antibody to my baby’s blood. We are seeing an OB now but it makes us very uncomfortable and we just don’t believe a hospital birth is right for us. So far the baby looks strong, healthy and unaffected by the antibody, yet everyone keeps acting like he’s going to have terrible problems. We just don’t believe in our hearts that is true and have been shown no evidence thus far to support that. Because of all this we are thinking we will have an unassisted home birth as well. We have been unable to locate any other midwives in our area so we’re doing the only thing we know to do. We have a little less than 12 weeks to go! Congratulations on your beautiful little girl, and thank you again for sharing!

  • Rachel

    March 28, 2012 at 3:41 pm Reply

    Thank you for your story. She really is a gorgeous little girl and you were so brave is hold fast about having a homebirth. I had homebirths with both my children and there is nothing like the empowerment of making that decision and going through the whole journey of labour without ‘experts’ trying to control it. Not to mention that if you’d been in hospital, they wouldn’t have let you have a 30 hour labour – they’d be in there with the forceps and the speeding up drugs as soon as they could. She will grow up to be a strong, amazing girl, I know it.

  • Christy

    March 28, 2012 at 7:44 pm Reply

    What a great birth story! Awesome to hear a local Virginia story with midwives I know of too! Anna is gorgeous and it’s wonderful of you to share all the pictures!

    • Lilly

      April 20, 2012 at 3:41 pm Reply

      I agree, such a beautiful birth story! And so nice to hear a local Virginia story with midwives I know of too! I’m due the month after next with my 3rd baby, 1st home birth, and my midwife used to work with Peggy also! 🙂 I think it’s awsome that you were able to have the home birth you wanted considering all the hurtles… I’m sure at the hospital you would not have had the bonding experience you had with her once she was born <3

  • Jennifer

    March 29, 2012 at 10:37 am Reply

    Hi, my name is Jennifer & a friend shared your blog with me because I was born with Amniotic Band Syndrome. I am missing the fingers & toes on my left side & had super tight bands around both ankles. I found your story extremely powerful – first as a mother myself & second as someone with ABS. I have never had the pleasure of meeting someone else with ABS in person or had opportunity to hear their story. My Mom has a very different & traumatic birth story from when I was born in 1970. The doctors whisked me away immediately after birth to perform Z-Plasty surgery on both ankles & to assess what the heck was up. Sadly, my Mom was never actually allowed to hold me till quite awhile later. Medical science is light years more advanced than it was 42 years ago. I would love to hear more about your beautiful family’s story has progressed. Thank you for sharing!

  • Jenny

    March 29, 2012 at 8:52 pm Reply

    It’s so awesome for me to see other women respond who have ABS. We’ve been taking Anna to the Shriners hospital in PA for her care (my husband’s uncle was kind enough to get us on the list before she was born, so we were all set). That’s the only other place I’ve seen anyone with bands and even then, there are only a couple of little kids I’ve seen with it. The doctor who has done the work on her hands is amazing…our whole family loves him and he said that Anna is one of his two favorite bands patients. 🙂 At our very first appointment, she was 6 months old. She’d recently started a new favorite game of trying to chew on her little nub and saying, “rawr”. He got a kick out of her doing that.

    Jennifer – I’d love to get in touch and tell you more about Anna and how things have gone for us so far…as well as hear your story. I don’t want to post my e-mail publicly though. If you go to the BWF FB page, I did respond to the link for this post. My name is Jenny Chandler. I’d love to have you as a FB friend…I have tons of pictures of Anna on there. 🙂

  • Stacy

    March 30, 2012 at 1:20 pm Reply

    She is just gorgeous! Thank you for sharing your story. I am so glad to hear that you listened to your instincts, in spite of the knowledge you had about her syndrome. She had a much more peaceful and respectful entrance into the world this way. Wonderful!

  • Joleigh

    March 30, 2012 at 6:40 pm Reply

    Oh my goodness! I just finalized an adoption of a little girl from Bulgaria with suspected ABS, although they don’t state that in her medical records. She is missing her left leg below the knee and her left hand looks almost identical to your little girl’s hand! It was like I was looking at my own little beauty when I saw photos of yours! Since I am a new mom in general and certainly new to ABS I would LOVE to get in touch with you and ask a few questions! Clara has a prosthetic leg, but I’m looking for any resources I can find on toddlers and prosthetics, surgeries that might help separate her fingers, etc. Any advice you can give would be SO welcome! My email is joleigh@centurytel.net. Thanks! Your daughter is absolutely gorgeous!

  • rachel

    April 6, 2012 at 6:36 pm Reply

    What an amazing birth story. I had Peggy for my first birth and just tierney alone for my second, August 2009. I remember tierney telling me what an amazing and wonderful birth she helped with in July- a beautiful baby girl with one leg. It was so cool to read the entire story!! It is such a wonderful thing to have babies in the comfort of your own home.

  • Ruthe Schultz

    April 25, 2012 at 11:48 am Reply

    She’s perfectly beautiful! Peggy and Tierney were my midwives, too. And for another birth, Peggy and Kim! So funny to see familiar names.

  • Jenny

    June 20, 2012 at 11:32 pm Reply

    Anna is doing fantastic. Her third birthday is coming up in just over a week. She’s getting better at walking with her prosthesis every day – she hardly limps at all anymore. Through sharing her story, I met a mom who adopted a little girl from Bulgaria who is a week older than Anna, has ABS, and it affected her in nearly the exact same way. We’re hoping to be able to get the girls together this fall for a play date. 🙂

  • Lisa Powell

    April 17, 2013 at 8:48 pm Reply

    Hi there, firstly I’d like to say Ur an immensely strong woman! U r also very blessed with such a beautiful family! My baby boy was born on Jan 28 2013 with all of his toes missing. Skyler-Sean (meaning God is gracious) is such a beautiful little boy with a personality straight from heaven:) I am trying to get in contact with as many moms as I can that have been through similar circumstances with ABS. The condition in our country (South Africa) is almost unheard of so finding parents to speak to is rather difficult – if ure not treated like the plague.,I’d love to spk to u via email if possible (lisapowell.rsa at gmail.com) look forward to hearing from u! Blessings!

  • Anna

    July 31, 2013 at 10:08 am Reply

    “We also didn’t want to risk our daughter becoming some sort of guinea pig once the hospital staff realised she was different.”
    That would have been my first thought/fear as well. Your daughter was healthy but a bit different, and in the hospital different is bad. I’m really happy you took steps to protect little Anna. She’s beautiful!!

  • Linda N.

    September 16, 2013 at 3:35 pm Reply

    Hello,
    Great touching story, my daughter was also born with ABS on her right hand. She has also had similar surgeries to separate the fingers. I am happy to say that she is now healthy and three years old. Today was a hard day though because as we were making crafts tracing her hands and she told me she didn’t want to use her right hand for the craft. It made me very sad to see that she felt that there was something wrong with her hand. I tried to tell her there was nothing wrong with her hand and that she was perfect. We just hugged. I know we will have challenges as we get older but if anyone has tips, I will definitely welcome them! Thanks…

  • Alexis Gutierrez

    May 16, 2014 at 11:15 pm Reply

    It is really interesting to read these stories! I am 17, and was born with ABS. I have had multiple surgery as well, and I just recently started doing more research on ABS. When I seen your daughters left hand it was so shocking how identical it is to mine. I have dealt with all sorts of things in my childhood from bullies to school programs, and I’ve yet to see anyone like me, let alone that exact!
    She is beautiful and mothers like you (and mine) have the best relationships. My mother has been my best friend and has helped my every step of the way. Because of great mothers like yourself kids like me have confidence in themselfs that they are JUST like everyone else.
    God bless you!
    -Alexis

  • sammi

    September 26, 2015 at 5:09 pm Reply

    What an amazing journey to share. My daughter was born with abs she is now 7 & I can’t wait to share this amazing story with her just so she can see that she isn’t alone in the world that there are actually other families/children who have went through the same thing.
    Thank you for sharing your amazing story ?

  • Sharon Padgett

    February 25, 2016 at 6:20 pm Reply

    We received news last week that my daughter’s unborn baby might have this. She is 13 weeks preganant going for futher tests tomorrow. I fell upon your story. It is so sweet and your baby girl is just beautiful.

  • Stephanie

    August 3, 2017 at 11:52 am Reply

    I found out a few weeks ago at my 20 week ultrasound that our son will be born missing the lower part of his right leg. And It got confirmed a week later with another ultrasound. One of my biggest worries is how do we teach him how to walk, and how early on and can he start wearing a prosthetic leg. After he will be born we’re not going to have very good insurance since I won’t be able to work full-time anymore so I can take care of him. I read online that insurance doesn’t always cover prosthetics, but my doctor said since he’ll be born like this it will, although she is just an OB/GYN not sure how much she knows about this. Can anyone give me insight or tips on how to raise a child with 1 1/2 legs? How’s your daughter doing now that she’s about 8 years old?

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