Lianne Totty- helping others cope with infant loss

Lianne Totty is an Administrator at a major teaching hospital in Washington DC.

After battling infertility and multiple losses in 2016, Lianne and her husband delivered her miracle baby at 27 weeks and spent 6 terrifying months in  the Neonatal Intensive care Unit (NICU) at that hospital, eventually losing the baby. That sent them on an emotional journey that led to her writing the book “ Baby Went to Heaven,” as a tool for parents who’ve left toddlers and other small children at home; and must later explain to them why the baby they were all eagerly expecting never comes home.

They eventually went on to have TWO other children, Lucas who was born at 25 weeks and Leighton born at 34 weeks at the same hospital where she had her losses but with very much different outcomes.  Lucas and Leighton are alive and thriving. They are her world.

Lianne’s story of loss and recovery encompasses the hopes and fears of every parent, a story that those who have suffered the death of a child will relate to.

(Her story in her own words)

I wanted to become pregnant so badly, it was all that I wanted. We had been married for 6 years, I was young and relatively healthy but I couldn’t get pregnant. I had PCOS and I was overweight. They were blaming me being overweight for my infertility. It didn’t make any sense to me because I worked in an OBGYN office and we had patients who were way heavier than I was. It was hard not to compare myself to others so I did it anyway. There was no other explanation for the infertility so we tried the known fertility drugs and none of it worked. I felt defeated but I continued to pray and just hope that God would grant us our wish. I decided to get a lap band placed so that I could lose weight and become healthier.  3 months after my surgery, while I was on birth control mind you, I got pregnant. I could not believe it. To say that we were overjoyed would be an understatement. We waited the appropriate 6 weeks and then shared the grand news, we were so innocent then.

I attended all of my appointments, did what was expected and I took care of myself. On January 18th 2012 when I was 18wks pregnant I had an appointment with my nutritionist, I had a good appointment we talked and then I drove home to take a nap. I was watching TV on the bed and I felt a pop, I didn’t know what it was. I was leaking but I couldn’t reconcile that with the fact that my water broke. I just remember being terrified. I went to the bathroom and I called my husband, I guess I didn’t understand what was happening to me. He raced home from work and we went to the hospital, after waiting for what seemed like ages, wet and cold in a hospital gown, they took me down to ultrasound, baby was still strong, his heart was still beating but I was losing fluid, I still had hope but I called my mom and told her what was happening. My mom and dad drove down from DC to Baltimore to be with us. We were praying, this was our miracle baby, this couldn’t be happening right? I was wrong, the Doctor said that I was losing fluid and couldn’t replenish it in time, baby was too early to survive outside the womb so there was nothing that they could do, they couldn’t save him. They took me up to labor and delivery in a beautiful delivery room with a tub and everything. This was a catholic hospital so although Anthony was losing fluid and he was too early to save; they had to wait for him to pass naturally. I was hooked up to a portable ultrasound machine and they were monitoring his heartbeat, we had to sit there and watch until his heart stopped beating. I delivered my baby boy, I held him in my arms, he was so perfect, he had fingers and toes, his mouth, his ears, everything was perfect. He was fully formed. I couldn’t understand why this had happened to us. I questioned everything, little did I know though that this was just the beginning. 

Two years later (2014) I was pregnant again, now the blinders had been taken off. I was cautiously optimistic but I was also aware of everything that could go wrong. We confirmed the pregnancy at 6 weeks, everything looked good, I had one appointment after that and baby was still there. I had a Nuchal translucency scheduled and that was where it ended, between my appointment and the Nuchal, my baby had passed. I remember how the Dr looked at me when she waved the wand on my belly, I just knew it. I didn’t break down, I just accepted it and asked how I could I could move on, I didn’t want to carry around a dead baby so a D&C (Dilation and Curettage) was scheduled. I had my procedure, recovered well but I was despondent. I felt like God had failed me, I couldn’t understand what I did to make this happen to me. I was a good wife, my husband I were happy, we had a strong marriage, I did everything that I should have done but here I was, losing my second child. I felt like I was being punished for something that I might have done in my past life. I still believed in God, I still prayed but I was unhappy and in a dark place. I was jealous and envious, it wasn’t malicious, I was still happy for my friends who were pregnant, I still wished them well but I wanted it to be me. I still kept the faith though and I prayed that I would get my rainbow one day.

Enter Lionel (2016) Lionel, my Lionel. So by this time we had been married for 10 years, we still wanted to have a baby and we prayed and hoped that God would see fit to bless us with a living child.  Lionel was born at 27weeks and he lived for 5 months and 25days before God took him home. 

I have a blog about Lionel, I will include the first post at the end of this and you can follow the blog if interested in reading more. 

Lucas 2017

After struggling with infertility, having several miscarriages and losing my Lionel after 6 months in the NICU.  I had my miracle baby, my Lucas.   Lucas was born at 25weeks exactly, five days after the anniversary of his brothers passing.  To say that I was nervous and afraid would be an understatement.  I think that I was also suffering from PTSD.  I remember not wanting to deliver him, praying to keep him safe at all costs, begging him to stay in there because I didn’t want to go through what I had gone through again.   We were at the same hospital, with my same care team but I was hoping and praying for a different outcome.  My preeclampsia was severe so they had to take him via c-section. If I waited longer it would be him or me or neither of us would make it, my organs were failing, I was swollen and unrecognizable.  I vividly remember one of the docs asking me if I had a recent picture of myself so she could compare what I looked like then and now.

I was so despondent, afraid to go see him, afraid to walk through those NICU doors but I did it, I leaned on my husband we went to go see Lucas my light.     

Lucas is perfect, he continues to be healthy and exceed every expectation that was placed on him. We are enamored and overjoyed. He is on the ASD spectrum and he is still perfect.  We finally got our rainbow.

Leighton 2020

In 2020 no less, I had a surprise IUD pregnancy.  Leighton, he was born at 34 weeks due to preeclampsia again.  I also lost my father during this time,  he never got to meet Leighton so I named him after him.  I miss my dad but Leighton was the unexpected light in that storm.  

After everything I went through, you’d think I’d lose faith, I didn’t, being in the NICU the first time around gave me so much strength, I grew closer to God, learned patience and I saw miracles every day.  Losing Lionel made me grow up, made me realize that I was so much stronger than I gave myself credit for.   It inspired me to write the book “Baby went to Heaven” to help explain infant loss to Children.  I remember after we came home without him, my goddaughter who was about 4 at the time asked me where the baby was and I didn’t know what to tell her.  I imagined that many more families were in the same predicament so I wrote the book hoping that it would help others heal.

(My first blog post)

So, this pregnancy was not an easy one.  My husband and I had been trying to have a baby for a long time.  After a couple of miscarriages and a lot of heartbreak, we found out that we were pregnant with Lionel.  I immediately contacted Dr Landy at Georgetown University Hospital since I had a relationship with her. She is an MFM physician and she knew my history. I had worked in the OBGYN department that Dr Landy chairs for 9 years so I felt that I would get the best of care there, I knew most of the doctors.

Dr Landy took care of me. I am now a diabetic and I have high blood pressure so she was managing this along with my internist Dr Wheeler.   I had a cerclage or a stitch placed at 16weeks since my cervix had started to open or funnel. They call the opening or funneling an incompetent cervix.  This is an issue because it can cause very early deliveries.  The cerclage or stitch holds the cervix close to prevent the baby from coming.

My cervix continued to shorten and funnel so I was placed on bedrest early.  I had appointments and ultrasounds twice per week to make sure that things were going along ok.  We found out during one of these appointments that Lionel wasn’t growing as he should, he was only in the 5th percentile. They said that they usually didn’t see that so early on so they were concerned. They called this IUGR or Intra Uterine Growth Restriction. I was tested for all sorts of genetic abnormalities and the tests all came back negative. There wasn’t much that we could do except hope and pray that he continued to grow.

I had a fetal echo and they thought that they saw abnormalities in his heart.  They were concerned about that too.  I was sent for a second opinion at Children’s hospital and it turned out to be ok, they said that he would need another one after he was born just to be sure but as far as they could see, everything looked like it should.

A few weeks later, they thought they saw abnormalities with his brain so off to Children’s I went again, this time for an MRI.  They said that the back of his brain was smaller than average but since they weren’t any other issues that were apparent he should be ok.  We were relieved.  I continued having my regular appointments and he was doing ok, still small but he was pushing through.

My husband and both of our families have been so very supportive throughout this entire process so I wasn’t going through this alone.   At one point it felt like I was getting bad news at every appointment that I went to so having them there with me meant a whole lot. The blog post ends here but it followed his story right up until his passing on October 15, 2016. You can continue reading his story here.