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CJ's Birth - Spina Bifida baby in a home-like birth centre

Nicholette lives in the USA and she gave birth to her first baby completely naturally in a low-tech birth centre. Only after CJ's birth did she realise that he had a major birth defect. She has submitted her story in case it helps other women considering their options with a spina bifida baby.

  

  When I got pregnant I decided that I didn't want any tests. I knew that if I found out I was having twins or a baby with a birth defect, I might be forced into having a c-section that might not be necessary. I had researched homebirth and felt confident that if a cesarean was necessary for me and my baby, that indications would likely come in labor or sooner. Since the World Health Organization recommends that c-section rates not exceed 10%, it seemed unlikely that I would actually need one. I had also researched prenatal ultrasound and felt that the risks associated with it were not worth subjecting my baby to, even if it meant early detection of a birth defect.

    I was 37 ½ weeks along when I went out with my husband and our two dogs for our daily walk. We had really been counting on our baby not coming early. We had gambled and ordered some baby gear that hadn't arrived yet. The baby's cloth diapers had just showed up a few days before and I wasn't in any hurry to prep them. We went out and walked for about an hour and when we got back at about 1:30 pm, I went to the bathroom. I wiped and noticed a little bit of blood. I was losing my mucous plug! I had read that this can mean labor is anywhere from a few hours to a few weeks away. I told myself that it might be a while before the baby came, but I had this nagging feeling that I might be entering labor.

    I began to have light contractions right away. They felt like very mild menstrual cramps. As the afternoon went on, the contractions became more intense. I sometimes had to sit down through one, but otherwise I kept going about my day. I decided to wash the cloth diapers to prep them for use, just to be on the safe side. My husband and I started timing the contractions, but they were quite irregular and we assumed they were just Braxton-Hicks because I hadn't had any Braxton-Hicks contractions before.

    I was full of energy though! Looking back, I can see that I was in that burst-of-energy part of early labor. Around 6:00 pm, I put the cloth diapers in for a second wash, and then my husband asked if I was up to going to the store with him. I was still in the super-energized stage, so I said yes. While we were at the store, though, the contractions began to work harder. While my husband was shopping, I walked through a couple more contractions, but eventually my body was working so hard that I had to stop and find a comfortable position. As we were heading to the cashier I had another strong contraction and I dropped onto all fours at the front of store to work through it! That was when I realized that I was in labor.

    We got in the car to go home and began timing my contractions for the next hour. The group of midwives we were seeing trained apprentices and we had opted for their apprentice package where I received care from an apprentice under the supervision of one of the midwives, so when the contractions were about one minute long and five minutes apart for an hour, we called the apprentice. She called Brigitte, midwife who was available that night and then Brigitte called us and told us to meet her at the birthing suite; she would be there around 8:00 pm. (We were living with my Jason's parents with no privacy and nowhere comfortable to birth, so we chose the birthing suite rather than home.)

    By the time we were ready to leave for the birthing center, I was wishing I had a comfortable, private place to birth at home because I didn't want to get up and go anywhere! We got to the birthing suite a little early and Jason tried to make me comfortable while we waited. I didn't care about anything except working through each contraction. Brigitte arrived within a few minutes and we went inside. The birthing suite was very comfortable. The midwives had really gone the extra mile in making it look nice. The two apprentices, Autumn and  Marsha, arrived while Brigitte filled the tub. Stepping into that tub felt so good! I stayed there for about an hour in the warm water and sighed through the contractions.

    I was getting hot in the water and I didn't want to stay there, but I didn't want to bother getting out. I also liked how the hot water made the contractions easier, so I was in a bit of a quandary. Brigitte asked me if I wanted to get out and I said yes, so she and the apprentices helped me move to other room and lay down on the bed. I was transitional for about half an hour and laid on my side through it. Finally, my water broke (with meconium in it) and the pushing really took off. I was trying to push while on my side, but the baby's heart rate dropped and Brigitte said I needed to change positions and get upright. We tried a birthing stool and that was too painful for me.

What ended up working was squatting while Jason held me under the arms. Everything opened up and felt great. But Jason lacked the strength to keep holding me and I moved through a few different squatting positions and trying the birthing stool again. I settled on squatting on the floor. The baby crowned within a few minutes and a couple of pushes later, slid out. CJ was born into his daddy's hands at 10:39 pm. But all that was nothing compared to the excitement of what happened next.

    Right after he came out, we saw the lesion. CJ had a hole in lower his back with red tissue bulging out of it. He was also blue and the whole situation made me nervous. Brigitte, Autumn and Marsha were all very calm, though. They suctioned CJ and put the oxygen next to him as a precaution. They put a piece of plastic over his back to keep dirt and germs out of the open lesion on his back. Then they got him nursing like they would any other baby. He wasn't crying very much, so I wondered if he was OK, but the midwives said that most naturally born babies don't cry too much.

    Since we had to leave for the emergency room, there was no time to rest. I had some minor tearing so I had to be stitched up right away. I got to hold CJ the whole time though. He fussed a little, nursed a little, snuggled a lot and generally seemed oblivious to the fact that his open back was a problem. After I was stitched up, Jason got to hold CJ while I got dressed and Marsha instructed me on how to care for the stitches. Jason and Autumn also sang 'Happy Birthday' to CJ and we took some pictures of him. As we were all getting ready to leave, Marsha took a moment and sang a lullaby to CJ.

    When we got to the emergency room and were waiting to see the doctor, Brigitte had me nurse CJ one more time. Jason stayed right by CJ's side the whole they were preparing him to be transported to the children's hospital for surgery. The EMT's (paramedics) were asking me questions about the pregnancy and birth, so I was little ways off from him. I wish I had lain down right away because between the fatigue from labor and low blood sugar from not having eaten much since the birth, I nearly passed out and at that point the hospital refused to let me lay down and rest without being admitted. Since I had just given birth, they thought something might be a seriously wrong.

    CJ's back surgery was performed two days later. The responses of the doctors at the children's hospital towards the birth and prenatal care ran the gamut from disgust to curiosity. One neonatologist rolled her eyes and sighed at us every chance she got and even yelled at us for asking when CJ could be taken off of the ventilator after surgery! The anesthesiologist for the back surgery had seen on CJ's chart that I had labored in a hot tub for part of the time. "So was he actually born into the water?" she asked. At one point, Jason looked at CJ's admission records and found out that we had "other healthy children at home". This was news to us! Apparently, someone had assumed that because I had had a natural labor without any drugs that CJ couldn't have been my first baby.

    CJ needed a shunt for hydrocephalus, so a couple of days after that surgery we got to take him home. He has been doing very well. He has had lots of pediatric chiropractic care and it seems to be helping. So far, he has been spared most of the issues the doctors predicted he would have. He has not needed a shunt revision yet and he has gone off of precautionary catheterization, though the doctors always warn us that things can change with spina bifida. He is having some issues with his feet and learning to stand and walk, but his physical therapist expects that with some work (and maybe shoe inserts) he will walk just fine. He is very determined and if he wants something badly enough, he always finds a way to get it!

    CJ has been an absolute joy. He is very bright and happy. And apparently we have an especially beautiful baby! Everywhere we go we get comments on how beautiful he is. Most people never suspect that he has a major birth defect. I'm so glad that we didn't know about the spina bifida before he was born. If we had known, we would have spent half of the pregnancy worrying unnecessarily about walking, urinary function, and a host of other things that the doctors initially predicted would be problems.

    When he was first admitted to the Neonatal Intensive Care Unit, the nurses commented on how much calmer CJ was than other babies they had seen in the NICU. At first I thought it was because he had a calm personality. As I got to know him though, I found that he is anything but a calm personality; he is a go-getter! I now think that he was so calm because he was born gently and allowed to be with us before he was taken to the hospital. All of the other babies in the NICU had had traumatic, high intervention births because they were considered high and then were separated from their mothers. I really believe that the birth makes a difference.

Related pages:

Can you have a homebirth if..Your baby has a suspected abnormality?

First Babies and homebirth

Meconium in the waters - what does it mean? Should you go to hospital?

Waterbirth at home

Birth before 38 weeks - what are the issues?

Home Birth Stories

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