Our New Normal

Submitted by Jonathan (Theo’s dad)

The day I found out we were pregnant, it was the last thing I expected to hear that day. We tried naturally for almost a year and had to turn to IVF due to medical reasons. I remember it being a random day during the two week wait period after the embryo transfer. My wife came outside while I was with our dog and she created a sign with the positive pregnancy test. My mind was instantly flooded with joy and excitement as I was looking forward to our new normal with our son.

Our pregnancy journey was difficult. We felt like we were given a shit hand to begin with. While the typical pregnancy journey starts with something “fun and easy”, it certainly was far from that for us. It felt like a job especially for my wife. Constant driving back and forth to appointments which were multiple times a week, constant tests and procedures, and I would guess maybe around 80ish injections over a few months. Our hard work paid off in the end, we were blessed with 6 healthy and usable embryos. Theo was our first.  The experience definitely brought us closer together as this was a challenge only a small percentage of people would understand.

Throughout the pregnancy we would always talk to Theo as if he was in the room with us rather than in my wife’s belly. He was such an active little boy, he would kick constantly just like his soccer playing dad. Every night he would kick and move around like crazy; I’m sure he was telling us that he wasn’t ready to go to sleep. We saw our future of him kicking the ball around in the backyard playing with our dog Ruby.

Our pregnancy difficulties began around week 14. My wife and I were at the airport looking forward to our babymoon. We were excited and felt like after 14 long weeks that it was the right time to go on a trip. Many people don’t know with IVF, we knew we were pregnant since the very beginning. For most people it might be the typical 6-8 weeks, for us it was like week 3. The weeks felt so long so we felt like we deserved a little vacation. Everything seemed normal until around 5 minutes before we boarded our flight, my wife came running out of the bathroom in tears. She was bleeding, A LOT. At this point we already finished our time with the fertility clinic and already met with our OB. The number one thing they both told us was that bleeding is bad, and if you saw any bleeding that you are probably having a miscarriage.

We quickly left the airport and drove to the nearest hospital. After waiting for several hours they took us in, they did every test and scan. Theo was fine and perfectly healthy, but they couldn’t find the answer to the bleeding. We didn’t bother to question the doctors because all we cared about was Theo’s health. After that appointment we met with our OB, he had his assumptions but didn’t want to give us a definitive answer for what it was but told us this our new normal. Bleeding is okay but if you experience excessive bleeding then go straight to L&D. Throughout the next four weeks we experienced small bleeding episodes but nothing of concern compared to what happened at the airport.

About four weeks later it happened again. Another extreme bleeding episode (around 18 weeks) however there was a lot of fluid that came out as well. We immediately thought my wife’s water broke and we went straight to L&D. Same thing, they did all their tests; Theo was healthy, and her water didn’t break. Again, no explanation for the bleeding or fluid. The story repeats itself as now we were told, more bleeding is your new normal and if its excessive then go straight to L&D again. At this point, frustration was growing because none of this seems normal.

Finally some good news. Around 20 weeks we visited MFM for the bleeding episodes. They scanned us and told us that they found a hematoma which if I understand correctly is an internal bruise and causes the bleeding. The hematoma had no impact on Theo whatsoever. It would take several months to heal but we were so happy to have an answer to something.

However my wife’s blood pressure had begun to rise. Once again, we were reassured that everything was fine and that the elevated blood pressure was typical during pregnancy. By 22 weeks my wife had developed swelling in her ankle and face. It was Labor Day weekend and we thought let’s just go to the hospital anyway. They took her blood pressure and it was alarmingly high leading us to the worst two weeks of our lives. She was in the early stages of preeclampsia (with severe features) and we were transferred to another hospital with a higher level NICU just incase of early delivery. My wife remained an inpatient for two weeks.

The two weeks were brutal. Upon our first arrival we met multiple doctors, all pushing for termination and when we said no so we can give Theo a fighting chance, they left in disappointment. They read all the measurements from the previous hospital and told us he was very undersized (keep in mind two weeks ago at our anatomy scan we were told he was growing perfectly). A few days later they decided to remeasure him and it was clear that he was continuing to grow although he was a bit on the smaller side. One doctor even said, “This isn’t the slam-dunk termination I thought it would be.” That statement still haunts me. My wife was an absolute rockstar, doing everything in her power to keep her blood pressure down with medication and by remaining calm. We avoided socializing and any activities that might spike her pressure.

We held on to 24 weeks on the dot, it was a sunny morning when a doctor ( one with good bedside manner) came in and gave us the run down of what was going on. My wife’s preeclampsia developed into HELLP Syndrome and delivery was happening NOW.

Theo was born on September 11, 2024 weighing at 15 ounces via emergency c-section. Theo was an absolute champ in the NICU just like his mom. Just like in his moms belly, he was active and showing that he was a fighter. Throughout the pregnancy I often said that he was a fighter and that he loved proving the doctors wrong. He was so handsome and I was so proud of him. I will always be proud of him. He had his moms hair which I thought was amazing. I love him more than anything else in this world and always will.  Tragically, Theo would pass away on September 12, 2024 around midnight. We were able to hold him, talk to him and spend time with him. Watching him take his last two breaths and watching his nose fill with blood after he passed haunts me every day and will continue to for the rest of my life.

Its been more than a month since Theo has passed. The days are long and they just don’t feel right. There is this weird feeling in the air that just feels like its hard to breathe. We can’t believe this is our new normal. We were looking forward to what our new normal was supposed to be. The middle of the night changings and feedings, the crying, being locked in the house. We would do anything to get those days. Our emotions swing from sadness and hopelessness to anger and frustration. We feel like the healthcare system failed us. About three weeks after Theo passed we met with MFM to discuss what occurred. The conversation about future pregnancies was inevitable. They expressed confidence in being able to help us with future pregnancies and even shared stories of people who had identical stories who went on to have children. They discussed and gave us a game plan on what the journey would like.

While their confidence for a positive outlook was great, frustration and anger grew. While were not ready to discuss having more children, it felt as if our pregnancy was a test run. Had action been taken sooner, perhaps things could have turned out differently. It’s frustrating to think that complications weren’t communicated with us from the start. We know we’re in the minority but we felt its crucial to be aware of the risks.

As we continue to grieve, we’ve realized how important it is for expectant parents to be fully aware of the possible complications, no matter how rare they might be. While these negative outcomes affect only a minority of pregnancies, it’s so extremely important to know they exist. We weren’t ready for this, and we feel that no one truly prepared us for the worst. If there’s anything we’ve learned from this, it’s that awareness and preparation are key, even if it’s painful to face those possibilities. We have spoken to so many grieving parents and they all said similar things, how doctors treating every pregnancy as “normal” rather than trying to find the small percentage of people who need to be with MFM throughout their entire pregnancy. I think it’s important for expecting parents to do their research on worst case scenarios because like us, your new normal might not come.