The Rollercoaster

I have spent the last two weeks preparing for my baby to die.  It was the most concrete thing I could hold onto.  I knew the facts.  Baby’s kidneys are damaged, leading to low fluid which will cause either stillbirth or the lungs inability to work after birth.  I know what stillbirth is; I see how people cope.  All my research showed such a poor prognosis, that I couldn’t imagine another outcome.

Today we had an ultrasound by one of the more experienced Maternal Fetal Medicine doctors- he had also done our CVS and fetal echo.  I respect him and value his opinion.  He gave us a glimmer of hope.  The baby’s growth was good- 54% (2lbs 15oz).  There was a tiny pocket of fluid- 2cm.  It’s not a lot.  It’s about what it was the two weeks ago- it had dropped to 0 last week, so its feels like a little improvement.  But most importantly, he said the chest looked essentially normal. He has seen ultrasounds of babies with hypoplastic lungs (small, non-functioning) and their chests look like just ribs and heart- not really much for lungs.  Our baby’s chest looked essentially normal. There is still no way to tell lung function, but it was a positive sign.

He encouraged us to meet with a neonatologist again to discuss prognosis.  He used an online program that could calculate survival based on gestational age- the closest figure he could give was at 25 weeks/1000gm, the survival rate was in the 90% and survival without severe/moderate neurological impairment was in the 70%.  These are rough figures and our baby is bigger (1320gm) and further along (29 weeks), which means the numbers would be better.  But this is from MFM and based on gestational age.  It doesn’t take into account our baby’s poor kidney function, possible poor lung function and other potential complications that come with Down Syndrome.  A neonatologist will likely be able to paint a more realistic picture.

It’s tempting to think that this means this baby is going to be ok- but I’m not sure that’s totally realistic either.  This baby will have kidney problems, will have breathing problems, will have neurological problems (from Down Syndrome and/or prematurity).  This baby still might die.  But there’s a chance?  I had given up hope, but now I feel like there might be some.  It feels scary and dangerous.

For now I just wait til the meeting with the neonatologist- I can’t commit to hope nor despair.  I’m in limbo.

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Learning how to cope

We made it through my first goal.  Get through Christmas.

I’ve taken some time off work, which has given me the chance to think, adjust and move forward.  I had a week at home alone and then this week, Chris was off work and we also spent time with my family.  All this time has made me feel more ready to get back to some sort of normal life.  It’ll be a new normal, but it’ll feel like some sort of life again.  I’ve reached the point where I think being at home is no longer very helpful.

The hardest part of figuring this all out is trying to come up with a coping strategy.  Do I have hope?  And hope for what?  Hope that this baby will live?  Hope that this baby will come home?  Live a life off a vent?  I feel like those are hard to really conceptualize.  In general I tend to be someone who prepares for the worst, so that I can be ready if it happens.  It may not happen, in which case I’ve worried for nothing.  But its how I’ve operated in the past and its worked in some weird way for me.  So I have spent this time thinking about losing the baby- what it will be like, how I will cope.  And if I don’t lose the baby, how much more wonderful that will be, right?  No one can paint a picture of the future for me- my case is not common.  I have helped people through loss and its the only scenario I can accurately picture.  So I am grieving, preparing to lose this baby.

I’m terrified to return to work.  I’m still emotional and don’t really know when a crying spell will hit.  I just hope when they come, they are not too public.

Finding peace with a heavy heart

I knew better than to go to an ultrasound alone.  Chris had a meeting that came up, but luckily my cousin works a few minutes away and so she joined me for my scan last week.  In my last post, I had said I was worried about growth and bowel.  Good news is growth and bowel are fine.  Baby is in the 57%, which is about 2lbs 4oz.  No issues with the bowel.

But we have a new set of issues.  As the sonographer was scanning, she got to a point where she was taking a measurement- I thought for some reason she was looking at the ureters (which had been dilated in the past)- so I asked her what she saw.  She told me she was measuring fluid. “Oh, I forgot about fluid! How is it?”  I asked.  Fluid wasn’t even on my radar as a potential problem.  It was low. 1.3cm total. I started crying.

I’m familiar with what fluid should be- I know at term it should be above 5cm and if its below, then we induce.  I had no idea what it would mean at 27 weeks.  We waited for the doctor who at least alleviated my first fear- I was worried we’d have to deliver.  I wasn’t ready!  First we had to figure out the cause.  Our best guess was that maybe I had been leaking fluid.  I didn’t think I had been- but who knows, maybe I was that midwife who didn’t even realize her water was broken.  So off to the hospital we went.

Once in triage we determined my water had not been broken.  My  midwife and the MFM (Maternal Fetal Medicine) doctor there went through other scenarios.  It could be uteroplacental insufficiency- they placenta is not working well, not feeding the baby.  But the baby was a normal size and they checked the blood flow from the placenta to the  baby, which was also normal.  It could be the kidneys.  Maybe I was dehydrated.  So the plan was to admit me, aggressively hydrate (IV, lots of water to drink), bedrest and re-examine in the morning.  Baby was looking fine on the monitor, so there was no immediate concern.  I got steriods to help with lung development in the event I had to deliver early.  The MFM doc talked to me about some potentially scary stuff- but I was convinced I could hydrate and things would be better. So far we had passed all the big landmarks- normal level II, normal fetal echo.  I was optimistic.

After 24 hours, and I think 7 liters of fluid later, my ultrasound showed essentially no change in fluid.  They took a closer look at the kidneys and they looked small- one was echogenic (sign of damage).  There was no urine in the bladder or the ureters.  The MFM doc confirmed my worst fears- the prognosis is poor.  We went on to meet with a neonatologist, a pediatric urologist and a pediatric nephrologist. After meeting with everyone, this is what we know now:

Kidneys

In utero, the baby’s kidneys aren’t working and they are atrophic (small).  The placenta is taking care of the kidneys’ usual function, so baby doesn’t need them now.  But s/he does after birth.  There might be some function- its just unknown until baby comes out and has to do it on his/her own.  This is an unusual presentation of kidney problems in a baby with Down Syndrome, but there is no other explanation, so they think the heart of the problem is chromosomal.

Lungs

A baby’s lungs need fluid to grow and expand.  Because there is such low fluid, the baby’s lungs will be small and may or may not function on their own.  We don’t know how long the fluid has been low- it happened sometime between 22 weeks and 27 weeks.  The earlier the low fluid, the poorer prognosis.   Low fluid at 27 weeks does not bode well, but it may have been low even earlier.

Fluid

Low fluid means baby has no cushion- s/he could very easily have a cord accident (push on the umbilical cord and cause stillbirth.  So the risk of losing this baby on the inside is high.  Also the fluid doesn’t allow the baby to move and stretch in the same way, which causes Potter’s Syndrome- some unusual features- limbs can be contracted (we already know there is clubbed feet), and there can be distinct facial features (low set ears, flattened nose, epicanthal folds around the eye).  Many of the features are also features of Down Syndrome, so I am unsure how that will play out.

Outcome

We’ve had some mixed messages through all this.  Every time I meet with someone in Obstetrics, we are given the worst possible prognosis.  Their impression is that this baby will not make it.  As someone in OB, I totally understand this perspective and I am devastated.  Every time we meet with someone in the pediatric field, they say there is no way to tell until the baby comes out.  I understand this perspective as well and I am the tiniest bit hopeful- but also scared of what further disabilities my bay could have.  My baby *might* live!  But will s/he need a vent for the rest of his/her life?  Dialysis? Kidney transplant? Seizures from low oxygen? What kind of life will my poor baby have? It’s so very very overwhelming.

Everyone agrees that the longer I stay pregnant, the better chance for lung and kidney growth.  Since there is nothing to do to improve this but wait, I don’t need to be in the hospital and I don’t need to be on bedrest.  For now we will do weekly testing- a heart rate check and a fluid check.  We will monitor the baby’s growth and look at the kidneys every few weeks. But the reality is, we might lose this baby.  If the baby can survive the pregnancy, we may lose him/her shortly after birth.  If the baby can survive that, s/he will be a very sick little baby.

I have taken a couple weeks off work to adjust to this diagnosis.  I feel like I’m living my worst nightmare for this pregnancy.  I opted for genetic testing early on so that I would know my risk of stillbirth. I thought of my patient who had a baby with known trisomy 18 (risk of stillbirth or death in the first week of life is somewhere around 99%).  I couldn’t imagine having to grow a baby that would likely die.  And that’s what I’m doing.  I feel like I could adjust more easily if I wasn’t faced with dealing with pregnant women everyday, harboring a secret about my poor sick baby, pretending to be joyful.  Its hard enough being visibly pregnant in the world in general under these circumstances, but to interact with 20-30 people everyday, who will likely comment on it and want to talk about it, just feels like torture.  People tell me not to worry about work, but I have to figure out a way to come to terms with it, because if I can’t work, I feel like I have no future.  This weighs on me too. That and the guilt I feel abandoning my colleagues at a very very busy time of year.

I am hopeful the new year will bring new perspective, new hope, new peace.  I will return to work in some fashion.  We will monitor this baby.  I will grow him/her as best I can.  For now, I am just working on finding some peace with such a heavy heart.

Grow, grow, grow…

We have an ultrasound tomorrow.  After the normal level II and fetal echo, I breathed a sigh of relief.  Those were the big ones.  No major birth defects. Heart is normal.  I thought those would be the big milestones.  Hah! Every ultrasound, every midwife visit is a milestone now.  My weight, my fundal height, baby’s heartbeat all are successes.  Or potentials for abnormal.  I can’t assume anymore.

A woman in my online community of people with prenatal diagnoses of Down Syndrome recently posted that she lost her baby at 30weeks.  She mentioned a growth issue.  I think that’s playing into my anxiety.  Tomorrow is a growth scan.  See how my kiddo is measuring.  I am constantly comparing myself to my patients who are at my gestational age and thinking- am I bigger than them? Smaller?  I lament about weight gain, but at the same time I don’t mind it, if my baby is growing.  That’s what my baby has to do now. Grow.  I tried measuring myself with a tape measure (something I do for patients in the office.).  Not a good idea.  I’m not flexible enough to get a good measurement. Plus, then what? I call my midwives and say I’m measuring too small?? What are they going to do? I have to just wait for the ultrasound.  I’m constantly learning the art of patience.

Plus there is always that instant fear of, will they see a heartbeat.  I’m feeling much better about that- now that I feel movement.  And what about the bowel?  Any other birth defects they’ll see now that the karate carrot is bigger?  So many things to worry about.

This is the down side of knowing ahead of time.  Instead of eagerly anticipating an ultrasound as a chance to see my baby again, I anxiously await it to see what news it’ll bring.  But then again, had I not known ahead of time, I probably wouldn’t be getting more ultrasounds.

For now I know this: My baby is moving, I’m getting bigger.  These are good signs.  Wish us luck tomorrow.

This is our life now

We went to the Connecticut Down Syndrome Congress Annual Convention. When I first got the diagnosis, I came across them in my initial internet search. I saw they had a first call program- meant for new and expectant parents who just received the diagnosis of a child with Down Syndrome. If you send an email, they’ll contact you within 24hours. I remember thinking it was a lovely idea, but I just didn’t feel ready. I thought I’d cry and they might not understand. I also wasn’t sure I was ready to be a part of that community. I saw they had this convention, but I was scared to sign up in case I lost the baby before the conference arrived. Chris took the reigns and eventually got us all signed up and even emailed with their First Call program coordinator. The convention was great. And hard. Emotional. Intense. Inspiring. When we walked in and were perusing some vendor booths set up, I was overcome with emotion. I had to step outside and have a little cry. “This is our life now,” I told Chris. I was overwhelmed. But I pulled it together and started our day. We attended three sessions each. I went to one on the Comprehensive Down Syndrome Clinic at CT Children’s Hospital- which I’m very excited to get connected with. It’s a physician and nurse team that help coordinate all the care and needs of children with Down Syndrome. I learned most parents are dealing with many doctors and sometimes struggle to know if they are doing enough and seeing the right specialists. The second was a session on potty training. A local woman runs a business where she will do intensive toilet training with children of any age and ability. She laid out an intense, but fascinating program, which I will keep handy for the future. From the parents in the room, I learned that my child will take a fair amount longer to potty train than typical children- something I had hear before. Most of their children were around 4 and working on potty training. The presenter made me feel optimistic- it can be done! At the same time, planning for a child in diapers until age 4 honestly seems depressing and overwhelming. I’m trying not to think too far ahead. Chris had two other sessions- one on low-tech activities and one on speech. We both had higher hopes for his sessions, but I think they were a little disappointing. I was proud I was able to do my two sessions alone without actually crying ☺ though there were times I got close. Lunch involved some videos about children with Down Syndrome and I got emotional again, though overall held it together. And a keynote address, from what I guess you’d call an inspirational speaker. I was a bit unimpressed- her slides were just inspirational sayings that she got off pinterest. Our last session, Chris and I did together- a new and expectant parent meet up, run by the First Call coordinator, Patty. We met 5 other couples/women- four had babies or infants with Down Syndrome (4mo-18mo) and one other expectant women, who was 33 weeks. This session was wonderful. I had had a weird interaction with a new mom earlier in the day and so I was a bit nervous that the session was going to be a lot of just baby talk and I’d be left out because I don’t have a baby yet. But it wasn’t like that at all. As the first couple introduced themselves, the mother became tearful recollecting finding out about the diagnosis. And I just felt this huge sense of relief. She was worried we thought she wasn’t happy to have her 18 month old daughter because of her tears- which is the same worry I have when people see me cry. It just hit home, that my emotions are so in line with others’ who have gone through this as well. And I’m going to still be emotional in the future- its normal. A few of the other moms became tearful as well. Everyone introduced themselves and told their stories- about their diagnosis and their children now. They were kind and just looked at me with such gentleness. There was no pity, just understanding. I cold see they knew how I felt and I could tell they knew the joy I will feel when I actually have this baby in my arms. The other expectant mom, put it well- for many reasons its great to know in advance, to take time to adjust. But until the baby is physically here is hard to fully adjust and picture life with and love of this baby. It’s hard to imagine the real future. The closing session was a presentation by a young man with Down Syndrome who told his life story. It was interesting to see how he could do this- he was hard to understand, but I got better at interpreting as time went on. He was engaging and funny. I could actually envision his childhood. At the same time, it was a reality check. I felt that same sense of being a little overwhelmed. This man is my future. I’m still adjusting to that idea. “This is our life now. “