How Mia Made Her Entrance: Part 2

Welcome back for part 2! If you are joining me for the first time, this blog post is a continuation of a previous post – How Mia Made Her Entrance: Part 1. I would encourage you to go back and read that post first or you may be a bit lost :).

Before I continue, I want to answer some questions I’ve been asked.

1. Did you know Mia had Mosaic Down syndrome before her birth? No, we did not. The ultrasounds did not show any soft signs to indicate she had a chromosomal abnormality.
2. After all you went through, would you still consider a home birth? Absolutely. The ladies – Missy, Lanai and Liz – had it under control the entire time. They handled it with strength, professionalism and confidence. One even suggested Mosaic Down syndrome, as rare as it is, I was able to go to our pediatrician with an idea of the diagnosis.
3. How do you know that Mia has Mosaic Down syndrome? After a few soft signs showed up after birth, we did a blood test which came back showing some of her cells had the typical number and some had trisomy 21. However, this blood test only determined the level of mosaicism in the blood cell line. We have no idea the level in any other cell lines (some may not even have trisomy 21). We didn’t want to put Mia through more testing as her levels change constantly when her cells die and regenerate.
4. What is the difference between simple trisomy 21 and Mosaic trisomy 21? The following is taken from imdsa.org. “Every cell in the human body comes from one initial cell: the fertilized egg, which is also called the zygote. After fertilization, the zygote then proceeds to divide. As new cells form, the chromosomes duplicate themselves so that the resulting cells have the same number of chromosomes as the original cell. However, mistakes sometimes happen and one cell ends up with a different number of chromosomes. From then on, all cells originating from that cell will have the different chromosomal number, unless another mistake happens. (All like cells originating from a single type of cell is called a cell line; for example. the skin cell line, the blood cell line, the brain cell line, etc.) When a person has more than one type of chromosomal makeup, that is called mosaicism, like the mosaic style of art in which a picture is made up of different colors of tiles. In Down syndrome, mosaicism means that some cells of the body have trisomy 21, and some have the typical number of chromosomes.”
5. I have never heard of Mosaic Down syndrome. How many different types of DS are there? There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.

Mia is my little mermaid baby.

She was the only one born in water and to this day loves to swim in any body of water! Luckily the traumatic birthing experience didn’t leave a negative imprint in her brain! Quite the opposite. She loves the water…unless you are washing her hair!

  

At first, I thought maybe this was supposed to happen after a water birth (since my previous home birth happened in a bed). I thought maybe they were just drying Mia off… and I was supposed to bleed that much. My midwives showed no indication of panic which definitely helped keep me calm. I believe it was when I heard my sister say, “Should I call 911,” when I realized something was wrong.

So what happened? We were on our back porch located out in Eads, TN. We own 4 acres with a lake so we felt comfortable and private outside. Half my body was in the water of a blue blow up pool. Usually you would want the water temperature slightly warm during delivery, but the sun was warming me (and baby) enough by itself so the water was temperate. We did not have neighbors at the time to our left and the ones to the right and behind are too far away to see anything. I told myself beforehand to keep it down! Ha!

Casa del Lago

From what I remember, I started to push, reached down to pull Mia out and all was well. It wasn’t until I adjusted and brought her back up to my chest that the water turned blood red. When I say my group from Full Circle Midwifery was absolutely amazing, I mean it! Lanai was up supporting me by my head. She immediately saw what had happened and applied pressure to Mia’s belly button. Later, I found out that Lanai did not remove her hand until the ambulance reached the hospital. Missy checked her vitals over on the porch couch. I could not see Mia because she was surrounded. Apparently Mia’s umbilical cord snapped off at her belly button after delivery causing her to begin bleeding out (keep in mind, the average adult has 4,500 to 5,700 mL of blood in their body; the average newborn has 270 mL—blood loss is a big deal for a newborn (source: healthline.com)). Although everything seemed ok there was a risk of Mia bleeding out again if Lanai removed her hand.

The next several hours were a blur. In my first post, I stated how everyone there was so essential. Lanai couldn’t move away from Mia. Missy was checking Mia’s vitals and making sure she was stable. Liz was with me the entire time making sure I was stable. My sister, Angela, called 911. My mom and Matt went with Lanai to the hospital. Missy, Liz and my sister stayed back with me. I was not able to go because the ambulance came so fast (which was awesome!) that I hadn’t delivered the placenta yet. Can you imagine your newborn baby being taken away in an ambulance without you?!!! It was the adrenaline and overwhelming peace and presence I felt from the Lord that day that kept me from absolutely losing my mind! I even laughed at one point when the firefighters came up to the back porch (I still don’t remember hearing the sirens). Obviously, I knew at this point that Mia was stable and the laughter came more from the complete obscurity and out of body experience I was having than more from humor. I was sitting on something – no idea what – in the middle of my back porch with my legs wide open waiting for the placenta to drop out when one of the firefighters looked directly at me and asked if I was ok? I lost it! Not in crying, but in laughter. My legs are wide open, I have no clothes on, I am covered in blood sitting on something with a bucket (?) in front of me, a pool full of blood next to me and you just took my baby from me. Am I ok?! Oh! Not to mention they were NOT old, fat firefighters! I was overwhelmed with embarrassment, exhaustion, grief and who knows what else at that moment. Luckily, Liz did not leave my side jumping into action on my behalf. I remember my mom saying how awesome she was at attending to me and the delivery of the placenta. No panic, no hesitation just action and support. I never felt alone and I never had to think.

Back in 2009, Matt and I went to Jamaica for our honeymoon. I remember the entire vacation it could go from sunny, clear skies to pouring down rain in an instant. If you have ever been to a tropical climate, I am sure you have witnessed this same crazy weather switch. The same environment that was serene a few minutes before just became quite stormy. That’s what happened to me the day Mia was born, not quite as literal though. I was experiencing an incredible high and the low or lows within minutes of each other.

After the ambulance pulled out of our driveway, it was only a few minutes before I delivered the placenta with no trouble, got cleaned up and dressed ready to go to the hospital. In the kitchen, Missy was measuring the umbilical cord which at the time I remember thinking, is this necessary right now? We have to go! All you medical scholars are probably thinking, yes it was necessary because the length of an umbilical cord can tell a lot. She packed it in a cooler and we headed to the hospital.

Here’s a tip if you ever have to ride in an ambulance. Do not assume they will ask what hospital is in network and we did lose the insurance battle in the end resulting in years later still paying on her visit…AND no Mia does not qualify for special financial assistance because her diagnosis includes Mosaic.

Because Lanai acted extremely fast, Mia did not lose a ton of blood and did not require a transfusion at the hospital. When Lanai removed her hand from Mia’s belly button it had already clotted.

When I arrived at the hospital, I did not get to see Mia right away. I remember sitting in the hallway on the floor waiting for her in the nursery. I was sitting on the cold tile floor, several hours after arriving when my sister told me our midwives suspected Down syndrome.

I saw Mia’s eyes, but she was so swollen from the trauma to her body that I wasn’t sure. I knew everyone around me was discussing something and the hospital nursery staff seemed to check Mia more throughly than the other babies. I was slightly upset for being kept in the dark for so long. Just tell me straight – I can handle it. I do understand why though. I just had a baby and went through a very high emotional few hours. The hospital staff never did say anything other than that Mia did not have enough markers to confirm a diagnosis.  So I am grateful in the end that my midwives said something because the staff probably would not have. The only thing the hospital staff did was pull us in a room to ask questions about why Mia came in without a mom. That was the least of my concerns at the time.

The events of the day didn’t seem so bizarre in hindsight. Mia’s umbilical cord snapped off because it was slightly shorter than typical due to her chromosomal abnormality. The reason Missy was examining the cord so closely was to see if this was the case—why the hospital staff kept picking Mia’s limbs up and dropping them…to see if she had any low tone issues—why people were so surprised to see that Mia latched on right away with no trouble nursing. I was thinking this isn’t my first rodeo here guys, come on! I had been nursing for almost the past fours years and knew what I was doing.

Our sweet Mia has a few soft markers of Down syndrome – small folds of skin between the eye and the nose, slight slant of her eyelids, a single line across the palm of only one of her hands (palmar crease) and she is short… but so is her mommy! All of these I obsessed over googling before her confirmed blood test. Typical people can show these markers as well. I was getting no where and killing myself in anticipation.

After her diagnosis, we went to all the specialists. I thank God everyday for how healthy she is. She has not exemplified a lower immune system, she has a perfectly healthy heart, her eye sight seems normal as of today, she had no trouble nursing, drinking or eating and she hasn’t had any surgeries not even tubes! I am amazed everyday by her strength and overcoming the odds. Although she has some physical features and slight delay in speech – I will take this any day. She has been our easiest, happiest, most independent baby. I would not change a thing about her and we have learned so much and will continue to learn through this process.

Thank you for joining me as I reflect on these memories. I hope this brings encouragement to some of you.

Mermaids are sometimes associated with dangerous events such as floods, storms and shipwrecks.

I am sure Mia and her siblings will bring much more adventure to our lives, but I have learned that if I just ride the waves instead of trying to fight through it, I will come out faster and stronger on the other side. Anticipation is much worse than actuality. I find myself worrying about the future too much. Instead I need to listen to my own advice and just ride the wave. Thank you, my little mermaid, for the new perspective on life!