The tough news....

Our family of five

Last week was filled with happiness, hope and excitement. Between the busy hours of Jeffrey’s work and fun outings with friends, we rearranged our bedroom in order to make it more spacious for a baby change table. Our large walk-in wardrobe was fitted out to accommodate a portacot for the twins to become a small, close-by baby room. I scoured gumtree (craigslist) several times a day looking for good deals on things I knew we’d need as our family rapidly expands. We are 16 weeks along but the size of my belly makes me feel more like 30 weeks and I knew in my head that I may only have a couple more months of energy and stamina to “get things done.” I cherished the moments that Annelise laid her head on my belly and I told her that her siblings are in there. She has no idea what that means and she probably is just excited that she knows where mama’s belly button is but nevertheless, it was precious. I enjoyed being past the “I feel chubby” stage to actually looking really pregnant.

On Tuesday I drove myself in to RPA Hospital for another routine ultrasound, something they would begin to do every two weeks from here on out to check that the twins were growing at the same rate. Because my twins share a placenta I’m part of the “high risk twins clinic” and the doctors themselves conduct my ultrasounds. Previous ultrasounds showed not one but two beautiful little babies jumping around inside of me. They appeared to be as active and busy as Annelise was on ultrasound so we were preparing ourselves for a handful…! This time as I lay down I clearly remember that the biggest concern on my mind was whether it was still too early to determine the sex of my twins.

Within twenty minutes, the obstetric registrar completed her assessment of the babies, laughing about how twin #1 was laying his/her head on twin #2’s bottom and bumping him/her, making visualization difficult. She suggested that I go empty my bladder before finishing off the ultrasound. When I came back in the room, the consultant who had been sitting in the corner of the room working on his own paperwork greeted me and started asking me questions. “How tall is your husband? What does he do? Where is he now?” I thought these were all nice but peculiar questions for a very busy doctor to be asking. He had me lay down again and pulled up the machine to take a look for himself. Then he asked if there was any history of genetic syndromes in our families. My stomach dropped when he asked this. It reminded me of our very first scan at 7 weeks when the technician asked me after a long silence if twins ran in our family. Except this time my stomach dropped even further. I told him “no” and he proceeded to take a look at my babies, calling out numbers and measurements to his registrar.

“Your babies bones are measuring a little short. At this point it’s a small discrepancy…a matter of millimeters…but I look at twin scans all day and this is enough to catch my attention. I want you to see my colleague who is a specialist in fetal skeletons and who is also a geneticist. I suspect there is something wrong with both of your twins. …then again it could be nothing” he said at the end, trying to offer a bit of hope.

His registrar, who is also a highly trained obstetric doctor, was a little more straightforward. “I want you to have your husband here tomorrow and I want you to brace yourself that this may mean your babies aren’t going to make it” she said. “Oh, and it’s a little early to tell, but I think your twins are girls” she said at the end.

Tears started streaming from my eyes as I quickly collected my belongings and raced out the door. I couldn’t believe I was one of those people…walking out of fetal medicine unit…walking out of hospital…with tears running down my face. One of the people I used to see and feel sad for. Poor Jeffrey had to hear me bawling on the phone to him amidst a busy day at work. I spluttered out the story between sobs and he promising to get home as soon as he could.

After what felt like the longest 24 hours in history where I cried more than I thought humanly possible, Jeffrey and I were back in the ultrasound room. We were terrified but hoped this scan would show something different. The specialist looked and measured. Our hearts melted when we saw Twin 1 sucking her little thumb and both of them playing and interacting with each other. They were so busy and seemed to enjoy each others company. Moments later he quietly turned the machine off, rolled his chair over to a desk which sat between us and said “I’m afraid I don’t have any good news.” My heart broke even more than it had already been broken. The thread of hope I held onto in my restless sleep the night before was gone. “Your babies have a rare skeletal issue that is…not compatible with life.”

My mind kept thinking back to the other voices during all our scans: “their brains look great, their hearts are fully formed, they are moving around fine and have all of their fingers and toes…” how can bone measurements be sending my babies to their grave?! The doctor said a definitive diagnosis cannot be made until amniocentesis results come back or possibly until after the babies are born but that everything points to one rare genetic mishap. This “error in genetic coding” is a random accident of nature and nothing we can cause or carry, he explained. This provided surprisingly very little comfort to me despite the fact that I’d agonized endlessly in the last 24 hours over whether I could have eaten something wrong or done something to cause this. “They will keep growing inside of you, the bone length discrepancy will get bigger as time passes, but ultimately their chest/ribs will not be big enough when they are born to support breathing and that is why they cannot survive.”

I began to break down at this point. “Would you like me to stop?” the doctor asked as he could tell I was barely able to see the paper he was drawing on through my tears.

“No, this is helping” I answered. Jeffrey held his arm around me tightly and I could see the tears welling in his brave eyes as well.

The doctor knew it was too much for us to absorb but offered his support in whatever decision we would make. He said “You may say to me that at 16.5 weeks, with all of this information, you would like to ‘interrupt this pregnancy’ given the fact that all of the specialists at the hospital agree that these babies will not survive. But remember we are just here to support you in whatever path you choose, not to tell you what to do. We are here for you anytime, whatever you need”.

 I told him right away that we would not be terminating this pregnancy but would appreciate advice on what to do from here. Jeffrey managed to say that we love these babies; this is the life that they have been given and although it is short we want to honor that life. When they are born we want to look into their eyes, give them a name and say goodbye. We want to love them and care for them for the whole of their short lives. To be completely honest, accepting the alternative seems so much easier. The thought of enduring four more months of pregnancy is daunting. I’d have to figure out how to answer the happy comments and questions about my belly that I receive on a daily basis. I’d need to go through another cesarean to deliver two dead babies. Milk would come in for babies that will never drink. My body would forever wear the marks of carrying twins to term. It’s all too much. “I want this to all disappear right now” I thought. In the same breath, I felt ashamed for having those thoughts about my babies. God’s creation, not mine. God’s gift to this world, not mine. And  I cried. And cried. And cried.

Jeffrey and I walked out, defeated and broken. I saw a happy couple leaving hospital with their newborn twin boys and I felt a stabbing pain that I realized then would become an all-too-familiar feeling in the months and years to come.

As I started to accept that this was really happening the anger welled up inside of me. “How could God be good? How could He do this to us?! Why should we even pray, how can it do any good? How could this be undone anyway! We are good, loving parents, we have so much love to give these children! Is God angry with us? Is our faith too weak? Have we not done enough to serve Him? Do we not give Him enough? Have we not prayed enough? Do we not have enough love or empathy for others that He feels we need to carry all this pain ourselves? How could this be good for us and for others, how could it bring glory and honor to Him?! How does he think that we can cope with something as terrible as this?” I’m embarrassed to admit that these were definitely among my first thoughts.

We were thankful to get home to our beautiful little girl, a 13 month old with so much life that you can’t afford to be depressed around her. She gave us a huge smile as we walked through the door and I sobbed as I held her tight. Every moment my heart broke a little bit more, though. Hearing Annelise say “mama” and run to me with outstretched arms broke my heart. I will never hear these babies say mama. As I changed her diaper, I kissed her tummy and she giggled. Tears flowed. How I long to hear these babies giggle one day.

My mind is exhausted from trying to make sense of it all and refuses to give me rest. I wake up all night hoping that the deep ache I feel will be gone and that this nightmare will vanish...but it doesn’t.

Jeffrey and I are hurting. Deeper than we ever thought possible. But somehow we have also been sensing moments of peace and I know this is from God thanks to the loved ones who are grieving with us and praying for us. We can pray for a miracle. God is big and I know this in my head and we really do want a miracle, we want complete healing. But, to be honest, I’m too scared to pray for that. I’m too scared to allow a thread of hope into my heart. I’m afraid that my “miracle” may be that their little bodies allow them to live a few days or months but that God will eventually take them from me. Maybe my “miracle” involves endless surgeries. That’s too hard. God must know that. Then again, this is too hard. I don’t know what to pray for.

In our moments of peace and clarity Jeffrey and I talk about the fact that this is their life. Life is short for all of us but our babies’ lives are very short. Somehow we get to know that the only life they will experience is inside of my belly, but they don’t know anything else. When we think about that, it’s pretty great. We are happy they have each other and our love. They are comfortable and warm; they get to play with each other, they listen to us talk and they are with their mommy 24/7. When I think about it in this way the sadness and anger I feel towards my expanding belly dissolves and I am thankful that I get to give them a nice life. We want their lives to be remembered. They are people that God created. They are part of our family forever. Their hearts are beating, their brains are learning and they are made in the image of God.

Psalm 77 offers raw comfort: “Will the Lord spurn forever and never again be favorable? Has his steadfast love forever ceased? Are his promises at an end for all time? Has God forgotten to be gracious?...Then I said, ‘I will appeal to this, to the years of the right hand of the Most high. I will remember the deeds of the Lord; yes I will remember your wonders of old.”

Lamentations 3 says that “the Lord will not cast off forever, but, though he cause grief, he will have compassion according to the abundance of his steadfast love; for he does not willingly afflict or grieve the children of men.”

And my hope is that Lamentations 3:21 soon becomes a reality in my heart and mind:

“But this I call to mind and therefore I have hope: the steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘the Lord is my portion’ says my soul, ‘therefore I will hope in him.”

We know that this will be a tough journey so please pray for us as we seek to honor God in this incredibly difficult time.