Disclaimer: I am not a medical expert. I am sharing my daughter’s kidney journey to document her story, share updates with family and friends and hopefully ease the mind of a parent going through a similar situation. Please read my full Disclosures and Disclaimers.
This is not at all where I saw this blog going. This is not the reason I started this blog, it’s not the way I wanted to share this blog but here it is for those who know and have questions and for those who don’t know, this is what we’re going through. Our youngest daughter, who we have nicknamed Sweet Pea, was born with a multicystic dysplastic kidney. This is the beginning of her kidney journey.
- What is a Multicystic Dysplastic Kidney (MCDK)?
- When was it diagnosed?
- Maternal-Fetal Medicine Appointment
- 3rd Trimester Ultrasound
- Birth of Sweet Pea
What is a Multicystic Dysplastic Kidney?
The first pediatric urologist we met explained it the best: multicystic means lots of cysts, dysplastic means doesn’t work, and kidney, well that’s a kidney. In layman’s terms, one of my daughter’s kidneys is basically full of cysts. In her case, it has zero function. She only has one functioning kidney.
Nationwide Children’s has a good explanation of what this condition is, how it’s diagnosed, how it’s treated, and common complications. Another good source for information is Children’s Wisconsin. It includes lots of facts i.e.: “Unilateral (one side) multicystic dysplastic kidney (MCDK) occurs in 1 in 1,000 to 4,300 babies born.”
Keep reading for our experience and feelings on having a child with a multicystic dysplastic kidney.
When was it diagnosed?
Short Answer: We found out about our daughter’s kidney at her anatomy ultrasound when I was 19 weeks 2 days pregnant (February 19, 2019).
The Full Story: We were in the process of moving from Newberg, OR to Bend, OR (about 3 hours apart). I already had to move the anatomy ultrasound appointment to a day when we were going to be in Newberg as I wanted to continue with my current obstetrician as long as possible before switching to one in Bend. My husband, other daughter and I were so excited to find out if we were having a boy or a girl. Some of my pregnancy symptoms and cravings led me to believe it was a boy. I had already reconciled in my mind that we were likely having a boy so imagine my surprise when we found out we were having a girl! I actually asked the ultrasound tech to double check. We were so excited to be having another girl that we didn’t notice that the ultrasound was taking a little longer.
After the ultrasound, we were asked to stay and wait for the doctor to read the ultrasound to make sure they didn’t need any additional images. I had an appointment the following day to discuss the results with a doctor, but I didn’t think much of this request. We were so excited for baby girl that we didn’t realize how long it was taking to read the ultrasound. I was very surprised when they cancelled my appointment for the following day and instead wanted us to meet with a doctor/nurse immediately. This is when they told us baby girl has a multicystic dysplastic kidney. I was in shock. I don’t remember everything that we were told or even if the person telling us was a doctor or a nurse. They referred us to a perinatologist.
What is a perinatologist?
A perinatologist, or commonly known as a maternal-fetal medicine (MFM) specialist, is an obstetrician who specializes in prenatal care of women who are at high risk of having a complicated pregnancy.
My appointment for the next day was cancelled and they scheduled me for an appointment with maternal-fetal medicine the next week. We went out to dinner but I remember still being in shock. I called my mom crying trying to explain what had happened. I told her, baby is a girl but her left kidney doesn’t work. The doctor/nurse told us I didn’t cause it, this condition is not genetic, and it’s fairly common (1 in 1000). No surgery as long as her right kidney works. And then, I pushed this information from my mind and focused on getting moved.
Second Ultrasound with Maternal-Fetal Medicine
We didn’t make it to the Maternal Fetal Medicine appointment the following week. A massive snowstorm hit Bend and we were snowed in. We didn’t end up meeting with a perinatologist until 3 weeks later (March 12, 2019 at 22 weeks, 2 days pregnant). We went back to Portland to NW Perinatology where I had another ultrasound and met with the maternal-fetal medicine specialist and a pediatric urologist.
What is a urologist?
A urologist is a physician who specialize in the genitourinary tract including the kidneys, urinary bladder, adrenal glands, and urethra.
During that 3 weeks we were in Bend, I met with an obstetrician who confirmed what I researched. At the time, there was no pediatric urologist or perinatologist in Bend. A perinatologist comes and does appointments once a month, that’s it. Not knowing whether or not I would need to have regular care, I decided to keep my appointment in Portland. I also wanted to find out if I could deliver in Bend or if I should deliver in Portland because of the need for specialists. I remember being confused filling out the paperwork for the appointment. The baby is the patient, but so am I.
Meeting the pediatric urologist
The pediatric urologist we met was awesome. He had great bedside manner and calmed any fears I had. He made it all seem like no big deal. Definitely something you want from a doctor, especially a specialist. He told us baby’s left kidney is full of cysts and doesn’t work but that the right kidney looks good. We want the kidney to look like meat or tissue but it doesn’t.
In most cases, the MCDK kidney just shrivels up and goes away (however, this could take years). The good side will be a “mega kidney” (bigger than usual) as it does the work of both. It is already doing the work of both. The pediatric urologist usually recommends an ultrasound on the baby within the first 3-6 months of life to make sure the good kidney is still functioning. They don’t care about the bad kidney as long as it doesn’t grow. It is also unlikely they would need to remove the bad kidney.
In very rare instances, the cysts will get bigger (making the bad kidney larger), the baby/infant/toddler will have feeding issues and they will have to remove the bad kidney. The pediatric urologist we talked to said it had been years since he’d had to remove a dysplastic kidney. Most of the time, it shrinks and goes away. This was very comforting to hear that my baby likely won’t need surgery.
Recommended ongoing care from the pediatric urologist
In the event that the baby develops other associated conditions such as a urinary tract infection (UTI) or a kidney infection, then the pediatric urologist would investigate with additional tests to make sure the good kidney isn’t being damaged. Baby will get routine ultrasounds and meet with either a pediatric or adult nephrologist (kidney medicine specialist-non surgery specialist). There are no pediatric nephrologists in Bend so we have to either travel to Portland or have her see an adult nephrologist.
What is a nephrologist? What is nephrology?
A nephrologist is a physician who specialize in treating diseases of the kidneys. Nephrology, sometimes called renal medicine, is a specialty within the internal medicine field related to kidney care.
The pediatric urologist confirmed that there are no pediatric urologists in Bend but as he will just be watching the kidney until there is an issue, appointments with him can be done remotely. He does not need to be in the room when I deliver. This answered one of my big questions. Yes, I could have a normal delivery in Bend.
No additional tests are needed when our baby is born. The pediatric urologist requested a 3rd trimester ultrasound and an ultrasound on the baby at 3 months of age. We will have the report sent to him and then talk to him over the phone. No need to drive to Portland. He said that children with one functioning kidney can have issues with that (good) kidney over time because it over works. They can develop high blood pressure and other kidney related issues (in adulthood). This is why it is important to get connected with a pediatric nephrologist.
The pediatric urologist also confirmed that a multicystic dysplastic kidney is not hereditary and I did not do anything to cause it to form. It just happens and I should not have mom guilt. This was helpful to hear (yet again) that I had not caused this for our baby.
Meeting the Maternal Fetal Medicine Specialist
I requested to speak with the Maternal Fetal Medicine (MFM) Specialist to ask a couple of questions before my appointment was over. The MFM specialist confirmed that I could have a normal delivery in Bend and that a 3rd trimester ultrasound was recommended to see the growth of the baby and to look at the kidneys. I also asked about having a caesarean delivery. The MFM specialist definitely shot down this type of delivery but said I should talk to my obstetrician. I got a bad vibe from the MFM specialist regarding my question about having a caesarean delivery. I was grateful that I did not need to see this specialist again.
Third Trimester Ultrasound
I was nervous for my 3rd ultrasound with our baby girl (May 21, 2019 @ 32 weeks 2 days pregnant). Not only was this my first (and only) ultrasound in Bend, I was worried what they would find with our baby’s kidneys. The pediatric urologist asked for this ultrasound to see how our baby’s kidneys are doing. We learned that our baby is still growing but so is her bad kidney. This scared me and I panicked a little. We had to wait until the pediatric urologist received the report and got back to us. I tried to take my mind off the worry and the waiting by unpacking my house (we had just moved). Thankfully my mom came to see my new house and to help me unpack.
We didn’t hear back from the pediatric urologist for 2 weeks. When we finally heard from them, they eased my mind but our baby’s condition hadn’t really changed. There’s still one good kidney and one bad kidney. They asked me to schedule an ultrasound for baby when she’s about 3 months old. I tried to schedule the appointment right after the phone call as I knew I would be lack of sleep after she’s born. The ultrasound place needed a birth date which I couldn’t give them as she hadn’t been born yet. So I had to wait…again.
Birth of Sweet Pea
Sweet Pea was born on July 7, 2019 at 39 weeks via a planned caesarean delivery in Bend. We decided it was best for baby and myself to have a C-section as I had a difficult birth with our first born and did not want to repeat the experience. That’s a story for another post but I will say that it was long and stressful on both myself and our daughter. We definitely didn’t want to put stress on our baby not knowing how this would affect her kidneys. This experience was completely different. My mom, sister and nephew came up to stay with our older daughter while I was in the hospital. The hardest part of the whole process for me was actually having to leave my older daughter over night (something I had not done before).
Keep reading here for the next part of our journey, our first trip to Portland to see specialists.