Don’t you love it when you go to the doctor and have to explain to them what a condition is? That’s what happened to me time and time again after my daughter was born with Gastroschisis.
Gastroschisis is a birth defect where the baby is born with some of their intestines on the outside of the abdomen due a hole being left while they are developing. The hole is usually of around 5cms which allows the intestines to fall out and continue to grow on the outside. Some extreme cases it will attach itself to the skin on the outside.
The cause is not yet known but research has said that young mothers, mothers who smoke and do drugs, and genetic reasons might be some of the reasons to increase the chances. Although they have not ruled out any other causes as it is simply unknown. Around 1:5000 babies are born with Gastroschisis and a lot of the parents including myself prior to my daughter never heard of it until they are told their child has the condition.
During the pregnancy women get routine tests done to make sure that all is well with the baby and herself. It is during these tests that the woman’s blood is tested for alpha-fetoprotein. If she has high levels of alpha-fetoprotein then it shows signs that the baby may have Gastroschisis and more tests are done including an Ultrasound. If Gastroschisis is found, then the mother will have depending on the hospital facilities an ultrasound every 2 weeks to monitor the baby. The parents will also be referred to a Specialist.
Babies that have Gastroschisis are known for having low birth rate, and for a mother to carry to 40 weeks is very unlikely. Doctors tend to want to induce labor earlier around 37 weeks to ensure that the baby itself doesn’t give up. I myself was induced at 38 weeks and was told by the doctor at the time, that I carried a Gastroschisis baby the longest so far at that current hospital.
After the child is born, most require surgery to fix the problem. As a lot of doctors are required, they try to induce the mother so she has the baby during the day or work hours of the doctors. I was induced early in the morning for a 6am – 6pm labor as that was the hours of the surgeons. Most doctors try to aim for a natural birth rather than a cesarean as the baby’s intestines are on the outside they do not want to subject the baby to anymore exposure than necessary. It is safer for the baby to come out naturally.
Each individual case is different. Some can have surgery straight away others may have to wait until all body parts are no longer swollen. How they proceed with the surgery also depends on the infant’s condition, but the abdominal walls are slightly stretched, and then the intestines are placed back inside. In most cases the surgery can be done straight away and is preferred to, less exposure is better to reduce the chances of infection. If the surgery cannot be done straight away the intestines and belly are covered with a special kind of bag to keep it safe from infection.
Once the surgery is finished the baby will be kept in the Intensive Care Unit for monitoring. The healing process usually takes around 6 weeks. During this time the baby will be fed via a vein rather than mouth. The mother is encouraged to express milk and freeze so when the baby can bottle feed they have the best milk possible. Whilst in the hospital, generally the nurses will care for the baby’s wound, sometimes offering the parents to assist to familiarize themselves with the process of cleaning.
Once the family is able to return home, the parents will have to care for the wound. Each wound would look different; my daughters looked like a little mushroom sitting on her stomach. It must be kept very clean, with the aid of salty water and clean bandages. The baby will be booked in for routine checkups until finally the time has passed they no longer need to clean the wound or cover it up.
For any parent to hear that their unborn child has a condition or disease is horrible and shocking. I myself being a first time mother didn’t know what to do. But with the help and support of many fantastic out of town doctors my daughter was born and had surgery without a hitch. There were bumps along the road, but she is a happy healthy little girl now and that’s all that matters.
There are many support groups out there and a lot more information as times goes on.