Emily Perl Kingsley, best known as a writer for Sesame Street, gave birth to a son with Down syndrome early in her career. After his birth, she authored a poem called “Welcome to Holland” where she describes her experience having a child born with an unexpected genetic condition. In this story, she compares her pregnancy to planning for a trip to Italy and the surprise news that her son as Down syndrome to getting off the plane and realizing you went to Holland instead.. She won’t be getting the trip to Italy she had planned and was looking forward to, and it’s ok that she’s disappointed. But, that doesn’t mean she still cannot have a wonderful vacation in Holland. I absolutely love this poem and have shared it with many families over the years.
But what if a few weeks before the trip, Emily got a call telling her that trip would be to Holland instead? This would have certainly impacted her planning, but more importantly, she would have been able to adjust to the idea of Holland and become excited for that vacation instead.
There are so many things that people do to prepare for a baby. There are baby showers, birthing classes, and busy weekends setting up a nursery. There may be figuring out work leave and interviewing to get into the most desirable daycare. They may read books, move to a bigger place, or arrange for long family visits. Call it nesting, or call it excitement, but the logistics are an important part of the process.
When I talk with expecting parents about prenatal genetic testing and what they may do differently if they knew of a diagnosis ahead of time, I get the impression that many people do not know the logistical things things that a diagnosis could impact. Below are a few true stories of patients of mine who have received a prenatal diagnosis and taken logistical steps to help make their baby’s entrance in the world run smoothly for everyone involved. I have been inspired by the creativity of some families, and I love learning from them and passing their wisdom on to new families in similar situations.
- Preparing a home:
- I had a couple who on routine carrier screening found out they were both carriers of cystic fibrosis (CF). Cystic fibrosis is a genetic condition that, among other complications, causes chronic respiratory infections. Because they were both carriers, there was a 25% chance that their baby was going to have the condition, which prenatal diagnostic testing confirmed was the case. This family threw themselves into learning about cystic fibrosis and found that to help keep these respiratory infections at a minimum, it’s important for kids with CF to live in very clean environments. What can help with that? Remove the carpeting. With the help of their friends and family, a few weeks before delivery all of the carpeting was removed from the home and replaced with hardwood floor. They were taking advantage of their heads up to make their home the best possible living environment for a child with CF. And, while this was a logistical form of preparation, I think performing the physical work helped the family in an emotional way as well.
- Buying a house in the suburbs
- One of my couples who learned prenatally about a Down syndrome diagnosis already had a 4-year-old at home. They were growing out of their downtown loft apartment and knew that before the new baby arrived they needed to find a new place to live. They had set their eye on condos in a trendy downtown neighborhood. Upon learning that their daughter would have Down syndrome, however, suddenly the school district became a much more important part in couple’s home buying process. While the school downtown was decent, the options for special education were far greater at the large suburban school district 20 minutes away. They were so thankful that they had not yet purchased their downtown condo, and ended up buying a house in a different school district where their daughter would receive the best resources and support.
- Changing the daycare plans
- With so many friends of mine having babies, I have been witness to the huge struggle that is finding daycare for a new baby. But just like finding a school district with great special needs resources, finding a daycare that can support a child with special needs (and that you are comfortable with) can be a challenge. For the most part, a baby is just a baby. But what if your child needs lunch through a feeding tube or has a very poor immune system? The wait list you got on for daycare when you were just 10 weeks pregnant now may not be the best option anymore. I have had many families who have completely changed their childcare plans to better fit their baby’s needs, and having time to make these arrangements in advance is extremely helpful.
- Changing maternity/paternity leave plans
- One of my couples had very intense and demanding careers. The mom has planned to take off 6 weeks and the dad just one. After learning about a genetic condition in the baby, both parents spoke with their companies about possibly extending their leaves knowing that their child may require a long NICU stay or extended hospitalization. Ultimately, they planned for the mom to take 12 weeks and the dad to take 6. They also discussed the possibility of the mom returning part time rather than full time after the leave was over. Could these arrangements been made in the moment? Sure. But for all parties involved, the parents, baby, and coworkers, preparing for an extended absence never hurts.
- Panning for special moments
- One special family I will never forget learned prenatally that their baby girl had a very severe form of dwarfism*. This condition was impacting her airway and we were very concerned that her tiny lungs would not be able to support life after she was born. Without knowing exactly what the future held, the couple wanted to make sure their daughter’s life was celebrated as much as possible. In lieu of a traditional baby shower, they had a huge celebration a month before her birth. They had a photographer in the delivery room to document every special moment as well as their priest to baptize the baby right after birth. They made a plan with the medical team for how much intervention they wanted to give her, finding the balance between helping her fight and keeping her happy and comfortable if her time was limited. It was helpful for the family to consider and arrange for the things they wanted for their daughter’s life in the event that it was short. It was also helpful for the medical team to know the family’s wishes so everything they wanted could be honored.
This topic may not strike the same emotional cord as my other posts, but that is part of my point. For some people, having a list of concrete ways that plans might change can help us to think more broadly about what it could mean to “do things differently.” Ultimately, the more knowledge that parents have about their baby’s first hours, days, and years, the more they can prepare, whether emotionally or with a to-do list.
*This baby with dwarfism surpassed all of our expectations and did beautifully post delivery. She had a long hospital stay and has had many surgeries, but continues to go strong and impresses me everyday. I love watching this now 2-year-old blossom on my Facebook newsfeed 🙂