Some Very Special Babywearing

My friend and fellow Special Education doctoral student, Tracy, gave birth to her beautiful baby daughter on April 4^th. This is their story; which Tracy has graciously allowed me to share with you all in hopes that it might help and inspire other families whose children have special needs to consider babywearing. If you would like more details of their story, you can read their journal at: http://www.caringbridge.org/visit/aletheaulrich/journal

Imagine going in for your regular mid-pregnancy ultrasound. You are excited to discover the gender of the baby you will be welcoming into the world in another 5 months. Your husband is overjoyed to discover that you are having a girl – as he hoped and predicted. But your ultrasound technician is concerned and calls your obstetrician in to the room. Next thing you know you are having a level 2 ultrasound and discovering that your baby girl has Spina Bifida and clubbed feet. This is the reality that my friend Tracy and her husband Matt faced less than 4 months ago.

A week later they were headed to Vanderbilt University’s medical center to see if they were eligible for in-utero surgery that could help allow their beautiful baby girl increased mobility and prevent brain damage due to hind brain herniation and hydrocephalus.

Luckily Tracy and Alethea qualified for the surgery. During a nearly 3-hour procedure, surgeons repaired Alethea’s spinal lesion. The surgery went well and Tracy was able to go home just a week later. She was prepared to spend the rest of her pregnancy in bed and lounging on the couch, but then just 2 days after getting home Tracy’s water broke.

Tracy spent 10 weeks in the hospital on bed rest. It is nothing short of a miracle that she was able to keep Alethea cooking to 34 weeks gestation. Tracy’s scheduled c-section went well and Alethea was amazingly healthy. She has been nursing like a champ since birth, breathing on her own, and was home a full month before her due date! She is generally a happy and easy-going baby – mainly because she has such amazing and responsive parents. However, like all babies she loves to be held and holding Alethea can be tricky.

In the hospital, the pediatric orthopedists began casting Alethea’s legs from the mid-thighs down to the toes in order to correct her clubbed feet, and straighten her knees and legs. These casts are like braces. Every week new casts are put on to gradually align Alethea’s legs and feet. Each time the casts are re-done it is like having braces tightened and leaves Alethea sore and cranky. To make matters worse, the casts are plaster to allow the orthopedist optimal precision. This means they are very heavy. Since Alethea is so tiny the weight of the casts is far more than her body can support. So whenever she is picked up her casts must be carefully supported.

In addition to the clubbed feet, Alethea also has dislocated hips. The doctors cannot correct her hips for several reasons: 1) the Pavlik harness used to treat hip dysplasia could compromise the blood flow to her lower extremities due to the clubbing; 2) the harness would not allow them to do the casting to correct the clubbing; and 3) the musculature in her legs is underdeveloped so even a surgical correction probably would not hold. Alethea’s hips can become sore and tender, especially with the extra weight of the casts on them. The physical therapists have told Tracy to hold Alethea with her hips slightly spread to encourage muscle development and hip socket formation. This is a very difficult position for Tracy to achieve holding Alethea in arms and supporting her casts.

Finally, both Tracy and Alethea have healing surgical sites. Alethea’s back is healing well, but is still delicate and tender. Tracy has had 2 major abdominal surgeries in just 3 months and as you can imagine, is quite sore.

Tracy got permission from Alethea’s doctors to use a wrap with her baby girl. The doctors said that if she could get Alethea comfortable with her casts supported and no pressure on her back then she could wear her as much as she likes. So, a week after Alethea came home, I went over and helped Tracy wrap her beautiful baby girl.

This was a particularly tricky teaching experience as Alethea’s immune system is very fragile and so while teaching Tracy to wrap I avoided touching Alethea. Usually teaching someone to wrap is a very hands-on process. Luckily for us, Tracy is a natural and we were able to get Alethea comfortably in the wrap on our first try.

Here is how we did it:

First, Tracy and I discussed 2 carries as good possibilities for Alethea – Front Wrap Cross Carry (FWCC) and Front Cross Carry (FCC). I demonstrated both carries with just the wrap and Tracy decided that she preferred the security of the horizontal pass in the FWCC.

At first Tracy was interested in a cradle position as this is how she usually carries Alethea in arms. However, after further discussion she indicated that Alethea tires of the cradle position quickly and would rather be held upright, but it is difficult to support the weight of the casts when holding her upright in arms. We also agreed that it would be easier to position a tiny preemie in tummy-to-tummy position and ensure that her chin was off her chest and that she could breathe well. We also agreed that the tummy-to-tummy position might allow Alethea to practice spreading her hips.

Next Tracy wrapped without Alethea. She learned to put the wrap on in a partially pre-tied FWCC. We discussed how to put Alethea in by first holding her on Tracy’s shoulder and then pulling the top rail up to her neck. We then practiced tightening the wrap strand by strand without a baby.

Finally it was show time. Tracy got Alethea’s diaper changed and then we put her in the wrap. Getting her in was the easy part. Positioning her with her casts, dislocated hips, and surgical site was the tricky part.

Alethea’s knees are in the casts and are practically straight. This makes it impossible to get a squatting seated position. Her knees, to my pleasant surprise, were bent just enough for us to tuck the bottom rail of the horizontal pass under her bottom creating a seat. However, her cast weight still seemed mostly unsupported. So, instead of doing cross passes, we did rebozo passes. Rather than tucking the bottom rail of these passes under Alethea’s bottom, made them go a bit lower to support the weight of the casts. As a preemie, Alethea has less head control than would a typical newborn, so we rolled up a small washcloth and folded it into the top rail to support her head and neck.

The result was an instantly content baby and a very happy mama! Just a few minutes later Alethea was asleep in the wrap and Tracy was thrilled to be able to keep her close and warm and have her hands free. We started the wrap a bit off center so that the knot would be at Tracy’s hip. This allowed her to sit down comfortably and she had both hands free to support herself when standing back up.

Tracy and her family could not believe how quick, easy, and comfortable the wrap was – even given Alethea’s special needs. Tracy is very excited to be able to use the wrap when she brings Alethea to the Church where her husband is the pastor. She will be able to keep Alethea close to her and safe from too many hands and germs. She is also excited to learn to nurse in the wrap.