It was around Kai’s first birthday that I started getting the question, “Do you think you guys will have another child?” I always knew I wanted more than one and Danny and I had discussed having at least two children. But at that time the answer was always… “not anytime soon”. I wasn’t ready to even consider bringing another child into the mix considering all of Kai’s needs. I was still so focused on what Kai’s life would look like and how we were going to provide all he needed to make sure he was living his life to the fullest. As time went on, it was harder to not consider the idea of having another child because the truth was I wasn’t getting any younger. There was already anxiety surrounding the thought of being pregnant again and the last thing I needed was to worry even more about experiencing complications around having a “geriatric” pregnancy. Still, it was hard to think about how I could manage a newborn along with all Kai required.
When Kai was about two years old, I got the question more and more… the dreaded, “Do you guys want another kid? Will you have another child? Are you scared to have another?” I get why people ask that… it’s kind of just the natural progression of life. Small talk. What’s next? In those days, Kai’s battle with epilepsy was still very much in the forefront AND the daily with him was still very uncertain. Again, I couldn’t imagine having another baby anytime soon. But I knew I still wanted at least one more kid. I hate to even admit it but I also feel like it’s kind of to be expected, I wanted another baby because I wanted to have a neurotypical child. I wanted to know what it was like to “be in Italy”. (reference to the Welcome to Holland poem I’m always mentioning) I sometimes feel guilty for feeling this way. I mean, I love Kai SO much and in my eyes, he’s perfect just the way he is. But I also see no harm in wanting to experience raising a “typical” child as well. Not to mention, I felt like Kai deserved to experience having a sibling. I loved having siblings when I was younger. (Of course, I love having them now as an adult too lol) But I knew that having another kid around the house could really enrich Kai’s life on the daily, the gift of love and friendship. How can I deny him that?
Yet, there has always been fear surrounding getting pregnant again. Kai’s situation was just so strange, so many unknowns. How would we know it wouldn’t happen again? For those who don’t know, my pregnancy with Kai looked “normal” on the outside. He was growing, heartbeat sounded great at appointments, bloodwork looked good, 20 week anatomy scan was normal, glucose test was fine and so on and so forth. It was everything you would expect being pregnant and the doctors had zero concerns. It wasn’t until I was about 35 weeks pregnant and I mentioned to my doctor that I felt like he wasn’t moving around that much. And honestly, it may have been mother’s intuition or in my opinion, God’s way of telling me so we could prepare. My doctor did a stress test that day and of course, he passed. He moved 5 times in the hour and they still weren’t concerned. But I pressed and they decided to do an utrasound, definitely not a routine one. It was at the ultrasound on Thursday, December 7, 2017 during my lunch break that we found the extensive amount of fluid in Kai’s head and everything became “not normal”. The whirlwind of preparing for a C-section that following Monday, seeing the Maternal Fetal Medicine doctor and prepping with Nationwide Children’s Hospital for Kai’s arrival all began. In the moment, it didn’t feel that chaotic, if anything, time seemed to move SO SLOW until he came into this world. But looking back, that was such a crazy unknown and scary time in our lives. Doing that again? Not really something I wanted to do.
We did all of the things before even considering having another child. We looked for answers as to what happened with Kai. (Spoiler alert – there are none haha) We saw all the specialists for Kai and tried to identify anything that would have caused his complications. We did ALL of the genetic testing. Even the tests that took a year to get the results. They looked closely at Kai’s, mine and my husbands genetic makeup. These were some of the details of our genetic testing:
- We completed the WES (Whole Exome Sequencing) test on all three of us which required us to just have a lot of blood drawn and looks at all of our 20,000 genes and their multiple exons
- We were warned that they would most likely find something – not necessarily anthing that caused Kai’s condition or to be concerning – but just because the test is so extensive they are bound to find something on everyone
- We were specifically looking at the L1CAM gene – this is the most common mutation passed from mother to son that causes narrowing of ventricles in the brain essentially causing Hydrocephalus
- Our testing came back negative for the L1CAM gene – which was good for future children
- There were no variants detected on mine and Danny’s WES tests – meaning our chances of having anything happen with a future child were next to none – of course there are always the one in a million unexplainable cases (IE: Kai)
Kai’s WES test did come back with a few variants. But that was also somewhat to be expected. I mean, we knew he had complications and a brain malformation so we knew there would most likely be some kind of genetic mutation, whether it was passed from us or not. We hoped that it would provide answers. Here were some of his results:
- He has a mutation on the DMD gene that is sometimes associated with muscular dystrophy but the geneticist said that none of his current symptoms show this diagnosis
- He has a mutation on the KANK1 gene that is common with cerebral palsy, specifically spastic quadriplegic – Kai was later diagnosed by his physical medicine doctor with spastic quadriplegic cerebral palsy but it’s unknown if these gene caused that specifically or if his collective challenges and brain malformations led to this diagnosis
- He has a mutation on the CDKL5 gene which is found in children/people with epilepsy and more specifically WEST Syndrome (which are infantile spasms) and Kai battled/battles both of these disorders
- Research does show that mutations on the CDKL5 gene tend to be more severe in males than females but most of these mutations are “de novo” meaning that are sponataneous and NOT passed down through families
After all of that, around when Kai turned 3, we decided we were ready to start trying for another and felt comfortable enough to possibly add to our family. Of course there were still some concerns of something possibly going wrong again and lots of unanswered questions …
- Can we handle Kai’s extra needs with a newborn?
- Will Kai feel abandoned by a second child?
- Can we afford another child?
- What happens when Kai has another emergency or is in the hospital? How will we hande that?
- Would we feel like we were neglecting a newborn to meet Kai’s needs?
- Can we handle a “typical” baby/child?
The list goes on and on, I could probably come with with a million more questions that I don’t know the answer too and would leave me feeling more anxious about having another. But utimately, Danny and I asked if we felt like our family was complete. We both said no. We felt like we wanted another child and that we would be able to make it work, no matter the challenges that come our way. Will it always be easy? No way. But will it be worth it, we think so!
Regardless of Kai’s situaion, I know a lot of what we were feeling is common with anyone having another child, even if they are neurotypical. The mom guilt can hit hard at times and we worry about neglecting our first baby and taking any attention away from them when growing our families. But I don’t think that is anything to feel bad about, as parents we have so much love to give! I think sometimes my fear around having another child is the fact that I’m praying for a kid who is neurotypical. And honestly, there may be times I have no idea what to do. I know, every child is different. But I feel that “first time mom” anxiety sneaking in when I think about all of the things we didn’t experience with Kai and how different it was… how am I going to handle that this time around? I mean… I’m asking and praying for it. So, I hope it’s something I can manage without completely losing it! haha Kai has always had his additional challenges and needs but sometimes I think it’s the “typical” things that can be harder than expected that I’m worried if I’m ready for or not. But ready or not… here they come!
At this point, I am almost 25 weeks pregnant with a baby girl! And we are over the moon! I think we are all in a good place with it. I’m feeling good, healthy, all seems to be going well and I’m mentally in a good head space to bring a new life into this world while also taking care of Kai and advocating for him! My doctors have been great this time around as well, watching baby girl closely and doing ultrasounds at least every month for our piece of mind. We are also blessed to have a great support system and that played a huge role in the discussion of having another child or not. And at this point, I just need to make sure I’m taking good care of myself and my health to ensure the best outcome for baby girl. (Not that I believe most of any of that is in my control) I also truly believe God knew what he was doing when he blessed us with this baby, I think a sister for Kai will be just what he needs… a nurturing soul. Someone who will show him endless love and support and *hopefully* be very sensitive and understanding of his needs as she grows and learns more about her brother. And that’s NOT to say I think a baby brother wouldn’t be able to do the same, I absolutely do believe that. I just know God has a divine plan and I guess he felt that this was best for both Kai and his baby sister. So, here we are… anxious, excited and ready to become a family of four!