Amniotic Band Syndrome – The Birth Without Fear Blog

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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